Email:jbunin122@hotmail.com Comments: He's a cuty, just like his mama! He's a fighter, just like his mama! He's a hokie, just like is mama and papa!
Email: Comments:Paige and Joe and Christopher -- I have just viewed website -- it is wonderful! I pray for all three of you on the way to work each morning. So happy about Aunt Lindsay's engagement and I know your mom is thrilled, too. Keep up the great work -- you can't imagine how many lives you will touch! Love, Martha Ann
Email:cdebrody@cox.net Comments: You guys have done a great job on the website! You are all continually in our thoughts and prayers and we will support you in every way we can!
Email: ljrdesign@yahoo.com Comments: Paige, everyday since we first became friends you have amazed me on how strong you are. I know Christopher will be just as strong and will win this battle! My offers to babysit still stand, anytime you and Joe need it. Congrats to Lindsay on the engagement!:) Love-La
Email: ginafimbel@yahoo.com Comments: Paige, Joe, and Little Christopher, Your website is so inspiring. Thank you so much for sharing your lives with us. We will continue to keep all three of you in our minds and prayers over the next few months. Remember how many people love you and that is is okay to ask for help! We all want to do something, all you need to do is let us know what you need. Please know we are all praying BIG TIME!!! We love you, Gina, John, and our little angel Andrew :o)
Email:mkcolombell@hotmail.com Comments: The website is wonderful. Please give Christopher a kiss for me. We are praying everyday. Like I said earlier, Paige, his picture is right at my nightstand. We are here anytime. That is so wonderful about Lindsey :) :) Talk to you soon. God Bless. Keep Faith.
Email:sjessee@centreville-umc.org Comments: Thank you for allowing us to be a part of your journey. May you continually be strengthened by God and those around you. Know that you are constantly in my thoughts and prayers! Blessings, Samantha Jessee
Email:pmhesse@hotmail.com Comments: the website is great, we are praying for Christopher every day! (Pete, Laura, & Marie Hesse)
Email:amandajbthomas@aol.com Comments:The website is fabulous just like the people who designed it!!! You continue to be in our prayers!!!! Love, Amanda and Craig
Email:grahamwk@unos.org Comments: Hi Christopher, Paige, and Joe. You are all in my prayers. A beautiful little boy, and a gorgeous web site. Your friend, Walter Graham
Email:tmus2000@yahoo.com Comments: Joe, Paige, and Christopher, Rachael, Mackenzie, Makayla, and I will keep all of you in our prayers. We'll be with the entire journey. Stay positive and know that we're always here for you guys. -The Mastals
Email:maryam.baradari@accenture.com Comments:Joe, I pray for you all every day. As I entioned to you already, both my husband and I are registered bone marrow donors. So, I pray for a match for Christpher. Please let us know the information about hi strust fund. You ok with me sending Christopher's website onformation to others in the AGC? Maryam
Email: Comments: You are all in our hearts and prayers. Please let us know if there is anything we can do her in Florida that we can do to help. Love Sammy & John
Email: hookie2001@earthlink.net Comments: He's adorable! I'll keep all of you in my prayers. -- Patty
Email: aryn_m@yahoo.com Comments: Paige and Joe - my thoughts and prayers are with the both of you and little Christopher. Hang in there!!! ZLAM, Aryn
Email: Comments:Paige, Joe and Christopher, Just want you to know that my thoughts and prayers are with you all. If there is anything I can do, just let me know. I too am a registered marrow donor. I hope you get a match soon. Love to you all, Denise Tripp
Email:otpera@verizon.net Comments:Joe, Paige and Christopher, What a great website and a precious baby!! We are thinking about you guys every day and we wish we could be back in Virginia to help you. We will keep in touch and do anything we can to help from afar. You all are in our prayers. Matt, Michelle, and Grace Dates
Email:stevenek@aol.com Comments: Our prayers are with you. Edna & Steve Kogan
Email: Comments:Dear Joe and Paige, We have been reading your website and praying for Christopher since the day he was born. We loved the picture from Mothers' Day because we met him at Sunday School while we were visiting Meredith and Don. I, Jeanne, am so glad I got to hold him at your house, Paige. Your courageous struggle is an inspiration to us. We are praying, our church choir is praying, so know that there are lots of Okie Presbyterians praying for your little son. We hope to see you in December. Much love from Meredith's parents, Jeanne and Gary Tesch, Norman, Oklahoma
Email:FANELLIDUMONT@AOL.COM Comments: DEAR PAIGE & JOE, I WANT YOU BOTH TO KNOW HOW PROUD I AM OF THE TWO OF YOU. AND WITH GOD ON YOUR SIDE YOU CAN'T GO WRONG. KEEP UP THE FIGHT FOR CHRISTOPHER. GIVE HIM A KISS FOR ALL OF US. IF YOU NEED ANYTHING PLEASE CALL. WE LOVE YOU ALL. AUNT ANGELA, UNCLE JOE AND GIRLS.....
Email:caroltim@erols.com Comments:Paige & Joe, What a precious little one. Christopher certainly has our prayers as you both do also. Marnie and Jeff have told us alot about your Christopher and we want you to know we will be praying for all of you - A great website and many many caring and loving people will help you through your journey. God bless. Carol & Tim Dawson
Email:spmccloskey@comcast.net Comments:Paige, Joe and especially Christopher, Thank you for posting this information about Christopher. Linda and I just want you all to know that we are thinking about you daily. Please dont hesitate to ask us for anything! We would love to help in any way. You are in our thoughts and prayers. God bless. Sean Linda Jordan and Megan McCloskey
Email:rdryer@eden.rutgers.edu Comments:Paige, Joe, & Christopher, we are so blessed for having all of you in our lives. Your strength, courage, and loving nature make you truly specially people. We know our "hokie clan" will always rise above the life challenges with which you are faced...please know that you always have our love, support, and prayers. Thank you for sharing all the wonderful pictures and Christopher's progress, it is truly inspiring!
Email:psleeman@erols.com Comments:Joe, Paige, and Christopher, Your website is wonderful and will be a comfort and inspiration to many. As your family travels down this hard road, remember that many have gone before you and would be glad to help and support. Johns Hopkins has the best and the brightest -- they will provide the expertise and you all will provide the heart. Our prayers will lift you up every day. Love, Peggy, Rick, Meg, Jason, and Allie Sleeman
Email:Dear Paige, Joe and Christopher, We love all of you guys. We don't have words to say the thoughts and prayers that are in our hearts. Please know that every single day we offer prayers for your family. As things develop-church fund, etc. we will support your efforts in material ways also. God bless you on this important journey. Love, Ann Graham(Walter's wife, Emilie's Mom) Comments:
Email:marcelo.vacaflor@cox.net Comments:Hi Christopher, Paige and Joe, What a wonderful site, for such a beautiful baby. Please let us know, since we live so close, if there is anything at all we can do for you. We're available 24/7. You are in our prayers and in our hearts. Marcelo and Kara.
Email:laynehokies@mindspring.com Comments: I am thinking and praying for all of you. I know that he will fight his way through this, like you did with yours. I hope to get to meet him soon. All our prayers, Sarah and Jimmy Layne
Email:DLParrish703@aol.com Comments: Christopher is so lucky to have two wonderful parents like you. He picked the right ones. You all are in our hearts and prayers and know that we are here whenever the need arises. Much Love Always, The Parrish Family (Mark, Dedra, Matthew & Molly)
Email:mmchick@comcast.net www.Mighty-Max.com Comments: Best wishes as you begin the transplant process with Christopher. It is very hard and very scary, but the Hurler community is wonderful and supportive. Hurler babies and their families are strong, and your Christopher is strong too (not to mention cute)! -Margaret Ciacciarelli
Email:SIMMONDS@UNOS.ORG Comments: Paige and Joe (and family) - I work at UNOS with your Mom. My thoughts and prayers will be with you and your little one and you battle his illness. Dee Dee Simmons
Email:alicecurran@charter.net Comments: I heard about Christopher this morning in an e mail from a freind and just checked into your web site. Your faith and love and courage justs flows from page to page. I live in Fort Worth, Texas and will surely be praying for all of you and get Christopher into the minds of hearts of people here and into our prayer. God's blessings and healing love are prayed for; for you and for Christopher, and all the brave little angels that are dealing with such difficult illnesses. I will keep tack through your updates, and be assured of prayers and love flowing out to you. Blessings, Alice Curran
Email: joschwa@hotmail.com Comments: Joe, Paige and Christopher... I'm thinking about you all. Just got back in the country, and hope I can help out in some way. I will be in touch. You are in my prayers. ZLAM, Jodie Schwarz
Email:orngbutrfli Comments:hey yall....im really sorry 2 hear bout lil christopher....he is such a cute baby....i wish yall the best....dont give up....yall will be in my prayers....God is by ur side....be strong...bye ps GO HOKIES!!!
Email:burkenc@charter.net Comments: Great website you guys. He's a little cutie. Hang in there. Much love, Edie's Mom (Laura)
Email:mmartire@acorda.com Comments:Dear Paige, Joseph and Christopher, Thanks to Ann I was able to go your wonderful website. My prayers are with each of you every day. I'm so happy to hear that you have a donor. Remember God is always there for you and we're all praying for you guys. Love, Mary
Email:scrubtec@cox.net Comments:Paige/Joe/Christopher, I am so happy to hear of the possible donor. I am keeping my fingers and toes crossed! Hope to see you soon. Beth and the Taylor family
Email:VTKRISTEN@YAHOO.COM Comments: PAIGE AND JOE, I AM VERY MOVED BY YOUR STRENGTH AND COMMITTMENT. I AM PRAYING FOR CHRISTOPHER DOWN HERE IN NORFOLK. GOD BLESS.
Email: meg_cantwell@yahoo.com Comments: Paige and Joe-- Laura gives us updates on you guys and told us about your beautiful Website. Christopher is so lucky to have parents as exceptional as you. He's a strong boy and has been a real trooper so far, and we just know he's going fight this latest battle and then get on with being a sweet and happy baby boy. We're thinking of you very often-- Chris, Megan, Avery, and Liam Cantwell
Email:Dhojnack@eesus.jnj.com Comments:Paige- what a precious little boy! You and your family are in our prayers. Please keep us updated on his progress as the journey begins. God Bless, Danielle, Paul, and Maggie Hojnacki (Ethicon Endo-Surgery)
Email:ForandKerrigan@comcast.net Comments: We've read the "Going to Holland" poem before -- how comforting and true is it?! We are so happy about the donor!! But so sorry (and understanding) about the insurance company! We will check in often and hope that you stay strong and well. Paul and Max Forand and Family
Email:Linda738@aol.com Comments:Dear Joe, Paige & Christopher, You are in our prayers each day. Keep the faith for as we know miracles do happen! Love you guys, Frank, Linda, Frankie & Michael xoxoxoxoxoxoxoxoxox
Email: jwalsh716@cox.net Comments: I was so very touched by Christopher's baptism yesterday. Thank you for sharing this webpage information and the precious pictures with the rest of us. I will be praying for the three of you! Judy Walsh
Email: meg_cantwell@yahoo.com Comments: Dear Paige and Joe--Laura gives us updates all the time and told us about this beautiful Website. We loved reading the story of your strong little fighter. You are an incredible family and it is so good to see that you're surrounded by so many supportive people. Please count us among them. Tell Christopher that Liam is looking for a friend other than his sister and can't wait to meet him. We'll be watching your updates and thinking of you! --Chris, Megan, Avery, and Liam
Email:rdryer@eden.rutgers.edu Comments:Paige, Joe & Christopher, Please remember that we are thinking of you this holiday, and giving thanks for all the wonderful health professionals who are taking good care of the people we love so dearly and for the gift of donor cells which will give Christopher strength!Love Always, Becca & Mike
Email:maureen1360@cox.net Comments:Dear Paige & Joe: We were at Christopher's baptism and are were so glad to learn about his special website through the church bulletin. We'll be buying subs for lunch next week for our 3 kids and praying for your strength and peace (Christopher will be fine; Mom & Dad need the prayers!) Say hi to Miss Maria for us (IFOH/CCC); she took care of our 2 oldest children. Now SHE has powerful prayer! Warmly, Maureen, Wilson, Colleen, John Paul & Christine Cook
Email: Comments: Your website has touched our hearts. Paige and Joe. My husband and I were present for Christopher's baptism and you've been in my prayers every day. I'm so glad the church included your website in the bulletin this past Sunday! I pray for legions of angels to surround your little family, to lift you up with love, and to warm your hearts with hope. Geoff and Beth Wheeler
Email: danahennesey@comcast.net Comments: Christopher is precious and is a strong little guy already! You and your family are in our prayers. God Bless ~ Chris, Dana, & Emma Hennesey
Email:threehappywilsons@yahoo.com Comments:We were lucky enough to be in church the day Christopher Joseph was baptized. Your family sat 2 rows in front of us and we were in awe of your grace and composure. He is just the cutest little guy and I feel a special connection because my son is Christopher too! You are in our prayers and thoughts. Many blessings to you and your family. The Wilsons (Janet, Bob and Chris)
Email:mcgawlj@unos.org Comments: Paige, your mom keeps us up to date about Christopher's progress. She's so proud of all of you and we think the world of her! Your family is in my prayers.
Email: Comments:This is a beautiful website. Gary and I are praying for Baby Christopher every day; our little Presbyterian church is praying for him and you, too. We hope to see you in late December. Meredith keeps us up to date on Christopher. You have a bunch of friends who love you and care for you. God bless, Jeanne Tesch
Email:maureen1360@cox.net Comments:Paige & Joe: What wonderful news about finding a donor! I know this week has been hugely exhausting for all 3 of you; may your sleep be restful once your head hits your pillow at home! Thanks again for sharing Christopher's journey with us, so that we might lift you up in prayer. Peace, Maureen Cook
Email:sgoins@NCSHA.org. Comments: I am praying for you,Christopher, and your family. As parents you must be very special people! God has entrusted you with a very special child. He's so new to the world and already touching many lives; causing people to pray like they never have before. He's causing them to think of someone other than themselves. Christopher is causing people to spend quality time with God. To be used of God at such and early age; I'm sure he will be a powerful man of God. Christopher, thank you for another opportunity of prayer. You are at the heart of God. For your family I pray their strength in the Lord, and that they will be able to see through the eyes of God, hear through the ears of God, and be lead by the spirit of God. God Bless you. Sandi
Email:ginafimbel@yahoo.com Comments: Hey guys, thanks for putting these updates on Christopher's hospital stay on the website. I know how tired you must get of explaining all of this over and over and so it is good that we can come here and read about it. You guys are amazing and so is your little Christopher. What a brave little one he is. I am looking forward to babysitting him on Sat. night!! Love you guys, Gina
Email:u know it Comments: Hey it's Terese! Sorry it took so long 4 me 2 c the sight but i haven't checked my mail in a while. I'm glad the baby is doing ok. Me and Izzy will prey 4 him..(p.s. I don't need headphones :) <- it's a smile)
Email: Comments:Dear Page ,Joe and Christopher! The Website looks good and you put in alot of time to keep us updated about my boyfriend. You and Jeo are quite the couple. Thats why I am so honored to take care of your son (my Boyfriend). We will see you next week at the Child Care Center. Love You Mss. Heidi
Email:linda738@aol.com Comments:Dear Joe, Paige and Christopher, We read the daily updates and you are in our daily thoughts and prayers. You have one strong angel there! xox Aunt Linda & crew
Email:CARINGBRIDGE.ORG/IL/AARONATHY Comments: I am praying for you and your family as you embark on what will be the most pressing journey of your lives. Don't give up hope just remember Aaron and how sometimes the things that seem the worst really won't be that bad. I am here night and day for any questions you might have. Wishing you the best of luck!!!! XOXO, Trisha Athy (Aaron's Mommy)
Email:gremlin274 Comments:Paige, it must be true that god won't give us anything that we can't handle. You and Joe are the strongest willed people I know, and I know that everything will be fine. Christopher is a little fighter just like his momma. Please let us know if there is anything we can do. You are all in our prayers. ZLAM, Nashua, Kevin, Trevor and Sydney Celata
Email: Comments:Joe and Paige, Thank you for taking the time to share Christophers news with all of us on his wonderful website.It is a great way for us to check on all of you and to see how he is doing.You are always in our thoughts.Love, Pete and Lori-Oh,keep putting in new photos!We love seeing the baby grow !He is adorable.Tell dad there should be a Christmas photo!
Email: Comments:We love the Christmas photos!Nick is too cute w/the antlers!And Christopher is beyond words!!!That is a LOT of beautiful hair for such a little guy!Merry Christmas, Love, Pete and Lori
Email:maureen1360@cox.net Comments: Dear Paige & Joe: Every new day must seem like "Survivor Island: The Parent Version", but know that there are many people who've never even met you who are praying for you and sweet Christopher. I want to pass along a verse from one of my favorite hymns, "I Want To Walk As a Child of the Light"...'in Him there is no darkness at all' Wishing you peace and light this Christmas! Maureen Cook
Email:aaronsmom1027@sbcglobal.net Comments:I hope all well for your little guy this past week. I have been praying for him day and night. I will also pray for strength within your family as you st
Email:aaronsmom1027@sbcglobal.net Comments:Sorry about the other entry Aaron hit enter on me when I was not looking. See all of the fun things you STILL have to look forward to. If all goes well and I pray that it does you too will have a healthy sneaky little boy!!!! XOXO-Trisha CARINGBRIDGE.ORG/IL/AARONATHY
Email:samdramsey@msn.com Comments:Thank you for the e-mail, I will add Christopher to my prayer list, you will find the hurler family to be very supportive and loving. Your website is great, Christorpher sounds very similar to Nolan in the begining, we ended up in PICU three times for airway issues and have had a great out come so far. My heart breaks for you and your family as you start the journey, it is long, it is heartbreaking but it is very rewarding, Pray alot and e-mail anytime you need an ear. We are in your corner. Love, The Ramsey's
Email:chmbrman@aol.com Comments:Thank you so much for allowing us to go on this journey with you. I am an Elder at SPC with your Dad, Paige-you must know how proud he is of ALL of you! Please know that our thoughts and prayers are with you and I will check back in to see how things are going. love, Sally Dunn
Email:MyRath88@aol.com Comments: We wish you the best, Mike and Stacy
Date: Wednesday, December 31, 2003
Email:CARINGBRIDGE.ORG/IL/AARONATHY Comments:I hope you all had a Merry Christmas!!! I wish you the best going into transplant. Maybe the new year will bring new life into your family. We liked to call Aaron's transplant day his Re-Birthday!!! We will be celebrating Aaron's re-birthday in less than a month and a half and look forward to helping you celebrate Christophers big day next week. Hugs and Kisses from Illinois!!!!!XOXO, Trisha Athy
Date:
Sunday, January 04, 2004
Email: parnell806@comcast.net Comments: As a member of Salisbury Presbyterian Church, I am involved in Congregational Care and have the privelege of compiling the prayer list for the adult Sunday School classes. I have been praying for Christopher and you both since he was born, and Paige's mom and dad have kept our church family informed of his condition. I've just become aware of this beautiful web-site which will be a blessing to us in Midlothian as we continue to pray. Glad to meet fellow Hokies; my husband and I met there and are graduates of the class of '78. We celebrated the 25th anniversary of our graduation at the Miami game! Talk about Hokie Pride!! God bless your sweet little boy! And his mom and dad, extended family, and friends. I'll keep praying and do consider each hit of this site a prayer! Love in Christ, Liz Ann Parnell
Date: Monday, January 05, 2004
Email: Comments: Thinking of you all and praying that Christopher will maintain strength throughout these days. God bless all the caregivers. Take care of each other. MBeitner, SPC
Date: Monday, January 12, 2004
Email:icmsterry@aol.com Comments:Dear Joe, Paige and Christopher, We are the Phil Saccomanno family of Tampa, FL. Phil and Grandpa Joe Miggliozzi are first cousins, and Joe and Ann are special friends as well as family. We have been following Christopher's story the past few months through Joe and Ann, who directed us to this amazing website you have created. We just wanted you to know that are thoughts and prayers are with you daily, and we applaud your faith and perseverance as parents. You all are an inspiration. God Bless and Keep you. Phil, Terry and Tricia (age13) Saccomanno
Date: Monday, January
12, 2004
Email:jennmarie@bis.midco.net Comments: I just learned of your beautiful son through Aaron Athy's website. I will be watching and praying for him too. My daughter, Allison, was diagnosed with Hurler Syndrome on Jan 8th 2003. She started ERT in May and is doing VERY well! Thank God! We have been very lucky to receive a lot of support from other MPS families and I know you will receive the same support. I wish you the best! Love, Jennifer Restemayer www.caringbridge.org/nd/allison
Date: Tuesday, January 13, 2004
Email:CARINGBRIDGE.ORG/IL/AARONATHY Comments:When Aaron was going into transplant and I was completely terrified my mother would always tell me "sometimes you have to let go and let God". I know how scared you are right now but you will not believe the amount of strength God is going to give you over the next few weeks. I will be praying extra hard for you tonight. Give Christopher lots of Hugs and Kisses from Aaron and myself!!!! XOXO, Trisha Athy (Hurler's Mom)
Date: Tuesday, January 13, 2004
Email: selboc@aol.com Comments: Hi there little Christopher... you are quite the cutey pie. I learned of you from Aaron's website.. another Hurler child I check on regularly. You see, Hurler has been a huge part of my life in the last year and a half as my son, Reese, was diagnosed August 2002 at 6 months of age. ERT was not yet approved so we went straight for CBT at Duke. Reesie Cup's transplant was a success but unfortunately, we lost him to pneumonia T+95, March 10, 2003. It saddens me to no end to learn of yet another sweet child being diagnosed with this horrible disease but I'm glad you have educated yourselves and are preparing to do what is best for Christopher. I'll make sure my ^^REESE^^ is watching over your little one - and you, too! I also kept a journal of our transplant life and you're welcome to visit it at www.caringbridge.org/nc/reesecup. God Bless and keep little Christopher safe in His arms, as well as mom and dad...
Date: Tuesday, January 13,
2004
Email:arhimes@msn.com Comments:Dear Paige and Joe, My heart is with you as Christopher starts his chemo. I remember the night my Andrew started chemo. It was tough. Although I knew nothing would happen right away, I still sat there watching him as if I expected his hair to fall out immediately or something. You are so lucky to be transplanting so early and so close to home. We live in Boonsboro Md (so we are neighbors) and we transplanted at Duke about 2 1/2 years ago. Andrew is doing really well and you can check in on us at www.caringbridge.org/page/andrewh My God bless you with strength and peace of mind. Anne P.S. I also had open heart surgery!!! We'll have to compare notes.
Date: Tuesday, January 13, 2004
Email:mmchick@comcast.net www.Mighty-Max.com Comments: I know how scared you are feeling right now, and I want you to know you have many people pulling for Christopher and for you. He is a beautiful, strong boy. We will check on you often and keep your family in our hearts.
Date: Wednesday,
January 14, 2004
Email:caringbridge.org/page/tommyries Comments:great web page...i'm the father of 2 hurler kid's(Tommy and Kaitlyn)and believe me you are doing the right thing...sounds like you have a strong family and plenty of support...we will be checking on Christopher...praying that everything goes well...we are in Minnesota going thru Kaitlyn's transplant now...she is on day #53 and so far everything is going good...just stay strong because like you said he is in God's hand's now!!!!
Date: Thursday, January 15, 2004
Email: samdramsey@msn.com Comments: We are thinking of you as things get going. The Chemo really is the easy part. We will be praying for a smooth ride. Can't wait to hear about day 0!!!! The day new life begins! Nolan sends a big hug to Christopher! Love, The Ramsey's
Date:
Friday, January 16, 2004
Email:selboc@aol.com / www.caringbridge.org/nc/reesecup Comments: Number ONE - don't get too upset if Christopher loses interest in walking and playing. He's a very sick little boy and he needs as much rest as possible. There were many days when my little Reesie Cup would just lie there looking at the ceiling but that's what he needed. He loved to watch and listen to Baby Einstein videos so they were pretty much playing in the room constantly. Remember, this little guys is going through hell right now... Reading some of your journal so far takes me back to Reese's... the puffy face the day after surgery.. I have a picture on his York site that probably looks very similar to Christopher right now. We just figured it was from the fluids they had to administer during his line surgery. Christopher is young and has plenty of time to bounce back when in the next couple of years. I only ask that you don't try to push him... This advice is just from someone who's been there.. please don't take offense. Christopher holds a very dear place in my heart, as well as all the other Hurler babies I've come to know, love, and even lose... God bless....
Date:
Saturday, January 17, 2004
Email:maureen1360@cox.net Comments: Dear Paige & Joe: With everything you have on your mind and heart, it's incredible that you are able to keep us updated so well via this special website; thank you so much for keeping us posted on sweet Christopher. Your church family is praying for all of you! We look forward to Day 100+ when we can welcome you back on Sunday (you'll have to come to all 3 services!) Warmly, Maureen Cook
Date: Sunday, January 18, 2004
Email:Jagators24@msn.com Comments:Christopher, Stay strong!!!Mom and Dad do the same...I have 3 children..2 have MPS1...Tommy is 5yrs. post BMT and Kaitlyn is 9 months old and we are +56 post BMT...We live in Florida but right now we are in Minnesota till Day 100...Kaitlyn was 7 months old for her BMT and Tommy was 23 months old...If I can help in any way please contact me....My childrens webpage is www.caringbridge.org/page/tommyries Take care and get some rest!!! Susan Ries
Date: Sunday, January 18, 2004
Email: Comments:We have just sent you an Email 1/18/04 and hoping some wallpaper will begin to come in-- With the strength of you two and Gods help, Joseph will come around a winner---May God Bless--- Mema & Papa Meeler
Date: Tuesday, January 20, 2004
Email:CARINGBRIDGE.ORG/IL/AARONATHY Comments:I am sorry to hear that things are off to a rocky start!! Once all of that yucky chemo wears off it should be smooth sailing!!! I am praying for your little angel day and night!!! He is going to do just fine and come out on top!!! Hugs and Kisses from Aaron and his Mommy!!!!!!!!!!
Date: Wednesday, January 21, 2004
Email:www.mighty-max.com Comments:Dear Christopher,Good luck on transplant day.GROW CELLS GROW !!!!!Sending prayers from Chicago...Mighty-Max's Granny... Judie Sweeney
Date: Thursday, January 22, 2004
Email:liz.stulga@att.net Comments:Dear Paige and Joe, I met you last week at your home with something from the church. You all have been in my prayers! You and this web site are amazing! Keep strong-together! Keep faith, I know you will--you both know this is your journey! Good luck today..thinking of you and sending good vibes. God bless you --Elizabeth
Date:
Thursday, January 22, 2004
Email: kris@mpssociety.org Comments: Just wanted you to know I'm praying for Christopher and your family. God Bless! Kris (mom to Kraig, MPS II)
Date: Thursday, January
22, 2004
Email:CARINGBRIDGE.ORG/IL/AARONATHY Christopher must really hate that central line!!!haha!! Well I hope that things take a turn in the right direction and you guys can celebrate a new life today!!!! You should ask the doctors if Christophers blood type is going to change after transplant. Aaron went for blood type A- to O+!!!!! He may be our flesh but he isn't our blood anymore. No matter, we love him even more!!!!! Wishing you a safe and happy transplant!!! XOXO
Date: Thursday,
January 22, 2004
Email: Comments:. .Dear Paige and Joe: It is now 9:50 a.m. on Thursday. I have just finished reading all of your updates and am aware of the transplant scheduled for this afternoon. I just wanted you to know I have never known anybody who has had to endure more than all of you. I feel privileged to know you and want you to know my prayers, my heart and spirit are with you all today. >Preston
Date:
Thursday, January 22, 2004
Email: asunne@hotmail.com Comments: I know that everyone - friends, family, even those who don't know you personally - are out here eagerly awaiting every post, hoping and praying for word that Christopher is on the way to becoming a healthy little man! May you draw even more strength, hope and courage from all of us who care about you! A big hug and lots of happy thoughts, Ange
Date: Thursday,
January 22, 2004
Email:arhimes@msn.com Comments:Dear Paige and Joe, We just got back from our check-up at Duke. I am so sorry that you guys are having such a tough time. I hope they will get all this stuff worked out and that the transplant will go much smoother. Please feel free to write or call us at any time if you need to talk. 301-432-5745. We will keep checking in. Love, Anne
Date: Friday, January 23, 2004
Email:willijs@erols.com Comments:Praise the Lord - the transplant has been done! May the healing begin! Paige and Joe - I marvel at your strength. May this transplant truly be the blessing and miracle you all deserve. Betty Williams Salisbury Presbyterian Church, Midlothian
Date: Friday, January 23, 2004
Email:arhimes@msn.com Comments:Happy Birthday Christopher!!! I am so glad that you were able to get your BMT today. I hope those cells grow real soon and that you feel better. Love, Anne
Date: Friday, January 23, 2004
Email:dslevin@adelphia.net Comments:Way to go Christopher! Grow cells grow! We are praying for engraftment and a quick return of your white blood cells. Keep up the great work and know that you are in our thougths and prayers throughout this process! Dana Slevin (Mighty Max's aunt)
Date: Friday, January 23, 2004
Email: Comments:Hello Paige and Joe, We're so glad to hear that the transplant has been completed! We think about you and pray for you often. Christopher is such a beautiful baby! We wish for you continued success with this treatment and that you can all come home soon. Love, Betsy & Winston Moss
Date:
Friday, January 23, 2004
Email:vtkristen@yahoo.com Comments:Paige, Joe, and Christopher, I am so excited for you all and I am keeping my fingers crossed and my prayers going that everything is going to be all right. Kristen Saunders Norfolk, VA
Date: Friday, January
23, 2004
Email:Beccao@comcast.net Comments:My prayers are with you! I love Christopher's grandparents Lin and Karen... Becca Ott
Date: Friday, January 23, 2004
Email:mmchick@comast.net www.Mighty-Max.com Comments: Happy Birthday Christopher! Grow cells grow!
Date: Saturday, January 24, 2004
CARINGBRIDGE.ORG/IL/AARONATHY GROW CELLS GROW!!!!!!!!!!!!!!! I hope the poor little guy does okay over the next couple of weeks!! We will be praying for you every chance we get!!! XOXO...Trisha and Aaron Athy
Date: Saturday, January 24, 2004
Email: Comments:Paige, Joe and Christopher: Praise God that the transplant was successful. Now we are all praying for the cells to grow with God's healing touch. Grow cells, Grow!!!!!! I pray that Christopher remains healthy during this very critical period when his little body has very little immunity. I just read the various e-mails, and know that the LORD is drawing so many people close to him through Christopher. We will never understand why question, but we know that his Grace is sufficient under all circumstances and his death has bought salvation for all mankind. I pray in the powerful and precious name of JESUS for all of you. Much love....Gai
Date: Sunday, January 25, 2004
Email:www.caringbridge.org/canada/carter Comments:Just wanted to let you know that your family is in our thoughts, especially little Christopher. Bernie and Kristi
Date: Monday, January 26, 2004
Email:rdryer@eden.rutgers.edu Comments: So glad Christopher had a good weekend after the transplant party! We are also praying every second for him and your family. You know I truly believe in the powers of both faith and science...with these in your corner we know Christopher's strength and cells will keep growing. Love you all. Becs
Date: Monday, January 26, 2004
Email:caringbridge.org/il/aaronathy Comments:Worry ends when faith in God begins.
Date: Monday, January 26, 2004
Email: Comments:Hello....I have 3 children and 2 of them have Hurlers..Tommy is 5 yrs. post BMT and Kaitlyn is +65 days post from BMT....Their webpage is www.caringbridge.org/page/tommyries I wish Christopher a full recovery and if their is anything we can do let us know...I have a few good ideas about taking care of the butt while going thru BMT...It breaks down because of the chemo...Right now we are in Minnesota but live in Florida...My email is Jagators24@msn.com My prayers are with ya'll.....Susan Ries
Date:
Thursday, January 29, 2004
CARINGBRIDGE.ORG/IL/AARONATHY I have been praying for you day and night!!! Christopher is at the hardest part of the journey (feeling the effects of chemo). We were aways told that in most cases the children start feeling much better around day +14 and it was true for Aaron. I know how you feel about his hair falling out. We always prided ourselves on having a child with such long beautiful locks. It was a shame to have to shave it off but the good news is that IT GROWS BACK FAST!!!! So if Christopher's hair falls out I encourage you to take some time to rub that bald head against your check as you are rocking him to sleep!!! It's a feeling you'll never feel again!!! I will be checking in on you again and again and again until your angel baby is safe at home!!!! XOXO Trisha Athy
Date: Thursday, January 29, 2004
Email: Comments:dear joseph and paige, have been keeping up with christophers progress on this site. my husband and i are praying daily for christophers recovery.he is a darling little boy. sorry we dont live closer, but this site makes it easy to see how youre all doing. stay strong, with love, elena
Date: Friday, January 30, 2004
Email:arhimes@msn.com Comments:Hang in there baby. These dark days come to all BMTpatients and hopefully they will be gone soon and the sun will come out. Mommy, please don't feel like you are over reacting to the hair. Sometimes something like that, that is close to a mommy's heart , just represents so much and losing it is just the last straw in a very tough week. The day Andrew lost his hair, I sat in his little room and called an old college friend to pour my heart out to. It just seemed the thing to do. We all know what you are going through. Love, Anne
Date: Friday, January 30, 2004
Email: selboc@aol.com Comments: Paige, I, for one, know the pains and struggles having to watch your child suffer thru chemo and transplant. I agree that you have to live hour by hour. The hair falling out really makes it all real... the mouth sores, the fevers, but think of these fevers as a good sign that the new cells are taking over. I continuously check on you guys and am thinking about you. Hang in there little buddy. Let's kick some transplant butt!!! love, Shawn, Taylor, and ^^REESE^^ Coble www.caringbridge.org/nc/reesecup
Date: Friday, January 30, 2004
Email:mchecko@nmdp.org Comments:Dear Christopher, My name is Mike and we've never met, well, at least not in person. Various circumstances have brought you into my life and this email brings me into yours. Isn't technology a blast! When I saw your pictures, I couldn't help but fall in love with you and your smile. You seem so happy, even though you are going through so much. I just wanted you to know that I am praying for you and will introduce you to the kids I teach on Saturday nights at Children's Church. They're a little older than you and are real prayer warriors!! Soon you have about 40 new friends that will be praying and pulling for a speedy recovery!! Wishing you well from Minnesota - it's 20 below outside, but we're warmer on the inside because of you! Love, Mike
Date: Friday, January 30, 2004
Email:ltjpost@cox.net Comments:Dear Parents of beautiful Christopher, I don't know how I've missed your son's site! I'm usually pretty good at keeping up with the sweet Hurler children. Thanks to Aaron's site I found you tonight. Please know that I will be praying very hard for your little boy. My good friend's little girl has Hurlers also and had undergone a BMT in MN a few years back. I know how scary these early transplant days are. Hold on to your faith and know that God is right there with you holding His hands out to comfort you when you feel so stressed and worried. These Hurler children are very strong! You are doing the best thing for your son to ensure a healthier and longer life! He is so beautiful! I know it's hard to watch him go through all this and losing his hair is sad. But, his hair will return and well as his bubbly personality! My prayers are with you and I chant GROW CELLS GROW from Connecticut! Lisa Post
Date: Saturday, January 31, 2004
Email:http://www.verbinnen.net Comments:Hello, as a Hurler family ourselves, we follow Christopher's journey. Hang in there and be strong. I know it is scary, we've been there. But sometimes everything just falls in place. We are now 6 months post transplant, and every day with our daughter is a gift. Be there for Christopher. Love him with all you heart. Hurler kids are amazingly strong, and though at times you ask yourself how much more they can take, they just take it and pull through. We are rooting for young Christopher. Love from Belgium. Alex, Anneleen & Yasmine Verbinnen - De Proost http://www.verbinnen.net
Date: Saturday, January 31, 2004
Email: Comments:Jim & Paige: "Cast your cares on the LORD and he will sustain you"..Pslam55:22 I have been reading Christopher's daily updates daily. I cannot imagine the very difficult and anxiuos times yoy all are going through, especially on Jan. 29th. I have been praying daily that the LORD will grow the cells quickly and that He will remove the infections (kidney) and stabilize the scary situations with Christopher's temperature and blood pressure, etc.,). I have shared Christopher's story with of my Christian friends at work and have asked them to pray for him. May our Lord Jesus be with both of you and especially Christopher and may His Grace carry you during the coming days and weeks. May many come to know Him as their Lord and Saviour through Christopher. With all my love....Gai
Date: Sunday, February 01, 2004
Emailjudithsween@aol.com Comments:We are all praying for Christopher in Chicago.Our Hurler babies are strong and so very special...Love,Mighty-Max's Granny
Date: Monday, February 02,
2004
Email: selboc@aol.com Comments: Paige - I know this is hard but you're doing the right thing in prayer and being there for your precious son. No amount of reading or even talking to someone about transplant life can prepare you. You have to live to understand it... I check on you and your family every day and pray for his speedy recovery with very little setbacks... You've got lots of folks praying for Christopher, too! Hang in there, keep your chin up, hold your child which ever way you can and thank God every day for your baby! We love you.... Shawn, Taylor, Angel ^^REESE^^
Date: Monday, February 02, 2004
Email: amy.williamson@inova.com Comments: My daughter is in the infant room at Fair Oaks. Christopher is such a beautiful little boy!! Heidi told me all about her visit and posted pictures in the room. Please let Heidi know of anything you or your family needs. And keep us updated.
Date: Monday, February
02, 2004
Email:ltjpost@cox.net Comments: I'm continuing to keep Christopher in my prayers. Lisa Post
Date:
Monday, February 02, 2004
Email:owcc42@yahoo.com Comments:Hi! I'm Trisha Athy's dad. Aarons papa. There is more people checking in and praying for you then you think. Love and prayers The Robertsons, Bob, Connie and Aarons' aunt Bobbie
Date: Tuesday, February 03, 2004
Email: Comments:Every time I think of little Christopher I stop and say a prayer. Christopher and his family are in my thoughts quite often each day. I always feel God's presents when I pray for him. Erma Edmiston
Date:
Friday, February 06, 2004
Email:ltjpost@cox.net Comments: Grow Cells Grow!!! Adenovirus...go away!!! Kidneys stay healthy!!!! I think I covered the most important chants for the day!!! Christopher continues in my prayers! Lisa Post
Date: Saturday, February 07, 2004
Email:CARINGBRIDGE.ORG/IL/AARONATHY Comments:I had a feeling Christopher would start feeling better soon. I am sorry to hear about that virus but try not to worry too much Infection Control knows what they are doing. I can't wait to see some more pictures of the new and improved Christopher and his bald head!!! You guys will be truckin' right along now!!! XOXO, Trisha
Date: Saturday, February 07, 2004
Email:judithsween@aol.com Comments:Please know that we are all praying for Christopher here in Chicago...Love Mighty-Max's Granny
Date:
Saturday, February 07, 2004
Email:islandprincess#quiltsoflove.com Comments:Hello Sweetie...I am from Quilts Of Love and I am here to welcom you to our family of loving friends. We are so honored to be making your quilt of love and hope you and your family enjoy it. Warm Hugs, Angel Island Princess
Date: Saturday, February 07, 2004
Email:wellsdvm@earthlink.net Comments:Paigie and Joe, I love Christopher's website and love all three of you even more. I am praying for him and for you in this battle and think of you often. Grace says hello and wishes she could meet Christopher. Frye and I hope to see you in the coming months. Love, Maggie
Date: Saturday, February 07, 2004
Email:Liefhouse@aol.com Comments:WOW!! 637!! What a trooper!! Christopher is quite the little guy!! We will continue to pray for strength and good numbers!! God Bless. Lori and Kevin Greenlief
Date: Sunday, February 08, 2004
Email:sshaiko@cox.net Comments:Joe, Paige and Christopher: We are in awe of the power of our Saviour! All praise to the inspiration given to the medical and support staff. May our Lord Jesus continue to bless you all with strength and courage as you continue progress toward the goal of "NORMAL and HEALTHY." Barb and I are blessed to be a small part of your lives and are proud to share in the heroic efforts of Christopher. He (and you both) are an inspiration to us all. Grace & Peace
Date: Sunday, February 08, 2004
Email:dslevin@adelphia.net Comments:Paige & Joe - It sounds like your family and friends are rocking the heavens with some serious prayers. Congratulations on Christopher's baby steps toward engraftment! Keep looking at the light at the end of the tunnel. You are all awesome! Dana Slevin & family
Date: Monday, February 09, 2004
Email: Comments:Dear Joe and Paige, Pete and I checked up after work yesterday.We are beyond thrilled at Christophers progress!God is answering all of our prayers for our little baby!Joe,it is camera time!We want new photos of the baby.Hey,he has no hair,so he looks like his Uncle Pete!LOL.Maybe soon we will jump in the car and take a ride out.We will throw you two out to dinner so we can visit with the baby.:-) Lori
Date: Monday, February 09, 2004
Email:walkerlj@unos.org Comments: My name is Lauri Walker. I work at Unos with Paige's mom Karen. I just found out about Christopher last week. What an incredible challenge and yet, what a miracle at the same time. My little girl Katie is 3 1/2 years old. Every time I hug her, I thank God for having her in my life. She has been my blessing as well because she has taught me so much about being a mother. Please know your family will be in my prayers.
Date: Monday, February 09, 2004
Email: JCMiao@aol.com Comments:I am a friend of Grandpa Joe's and have been following Christopher's progress with great interest. My prayers are with Christoper, Paige, Joe, his great grandparents, grandparents and growing extended families. My nephew, Darryl, is a JHU grad and currently a resident at Dallas Children's with a specialty in neonatology. I have shared this website with Darryl. I am sure he will be interested in following Christopher's progress as well. Paige, you are making a marvelous contribution by maintaining this website. This will serve as a great learning tool for the physicians as well as to keep all the family and supporters informed. Bravo! Keep those counts going up, Christopher. We are all pulling for you! God bless the entire Migliozzi Family, Judy Miao
Date: Monday, February 09, 2004
Email:corsmovt@aol.com Comments:WOW!!! It was so thrilling to log on today and see those numbers from yesterday!!! I told you that beautiful little man of yours was keeping the Guardian Secretaries on their toes with the bundles of incoming prayers!! Its no wonder his ANC tripled overnight! :) April, Jeremy, & Ava
Date: Monday, February 09, 2004
Email:benchs63@bellsouth.net Comments: God is so good, all the time! The wonderful manifestation of His glorious, healing power has become evident in Christopher. Stay strong in His might and know that the Joy of the Lord is your strength. I can't tell you how happy the news made us. We knew Christopher would rally but our human emotions got in the way. Christopher has a wonderful mission on this earth that the Lord has planned for him and he will grow to complete it. We love you and know that you are constantly in our prayers and thoughts. Group hug to all of you. Love in Him, Aunt Terry and Uncle Bernie and the rest of the clan in Georgia.
Date: Monday, February 09, 2004
Email: Comments:HI Paige, I have been asking at work how things are going with you and Chris,Sabine gave me this webb page. Please know that I think of you often and are praying for Chris every day.Take care. Jane Ledington/Anesthesia Dept. Innova Fairfax.
Date: Tuesday,
February 10, 2004
Email:hallen@iliant.com Comments: Dear Paige and Joe: I look at your website often and pray all the time for the baby. God bless all of you. Paige, you do not know me, but I know Joseph from LeCroy as I worked with Joe's dad. What wonderful, patient parents you both are. Waht a marvelous little fella you have. Helen Allen cabernet817@hotmail.com
Date: Tuesday, February 10, 2004
Email: Comments: Paige, Joe, and Christopher-- We are keeping up with Christopher's progress by reading your journal, and are continuing to keep your family in our thoughts and prayers. Stay strong! Take care, Emily and Tim Jones
Date: Friday, February 13, 2004
Email: Comments:Joe,Paige,Christopher: We praise God for all he is doing. I pray that the doctors will be able to resolve the GI problem soon. May our Lord Jesus continue to give you His GRACE that will carry you day by day. With all our ove...Pat and Gai
Date: Friday, February 13, 2004
Email:benchs63@bellsouth.net Comments:Dear Paige, Joseph and Christopher, This is just another rough patch, and you have been through many. Just as the other crises passed, this too shall pass. Our church and other friends keep Christopher and you in their prayers. You all are in the constant presence of the Lord through prayer. May Jesus wrap you all in His Loving Arms and carry you as you rest in His Love during this crisis. We love you, Uncle Bernie, Aunt Terry and the Georgia clan.
Date: Sunday,
February 15, 2004
Email:hscottrn@verizon.net Comments: Dear Christopher, Mom, and Dad: I'm so sorry to hear that you aren't feeling well. Everyone on the PCRU is constantly asking about you, checking up on your progress. You are all in my prayers. Hope that the ride is soon heading up-hill. Love, Heather
Date: February 27, 2004
Time:
10:56 AM
Email:CARINGBRIDGE.ORG/IL/AARONATHY Comments:We are so HAPPY to hear that those silly old Hurlers cells lost the WAR!!!!!!!!!! Make room for the new and improved Chirstopher!!!! He is going to knock you socks off!!! GROW CELLS GROW!!!
Email:hokiern@m3tc.com Comments:
Email:hokiern@m3tc.com Comments:The fourth graders at Carlton Hills Christian School in Santee, CA are praying for Baby Christopher to get better. Mrs. Ginny Rodriguez gkrodriguez@yahoo.com
Email:beni971@bellsouth.net Comments: Christopher, Paige, Joe...Please know that you are all in our constant prayers. Just a thought...there is generally no vegetation growing on the mountain top, the lush vegetation is in in the valley. May Jesus be your constant companion as you travel the valley. We realize Paige how difficult it is to write the daily updates but they keep all of us posted. We can cheer with you and cry with you, so hang in there your communication with all of us through the daily update page is priceless. Love and hugs to Christopher, Paige and Joe. Aunt Terry, Uncle Bernie and the Georgia clan.
Email:dmcstark@aol.com Comments:Paige I met your Mom at Stein Mart today and she told me all about Christopher, I was not aware that you and Joe were in such a crisis and of course I am over whelmed and even more so after reading the web site. You are all so brave but non as much as Christopher! Paige you are such a strong soul that I know you are the best Mom this little guy could have. We sill keep you all in our prayers. I am going to give the web site to Laurie, we are planning her wedding right now to a great guy from Raleigh she met in college, July 24 will be the big day just a couple months before Lindsays. Again we will pray for his speedy recovery from the transplant and hope the ear infection clears quickly. Diane Stark
Email:www.draee67@aol.com Comments:Our Prayers and thoughts are with you all. My daughter is 17months and we are on day-4 to transplant here at Childrens Memorial in Chicago. Be strong Christopher. Denna www/caringbridge.org/il/niki
Email:sophie@melroseroad.co.uk Comments: Hi, sorry to hear that Christopher has GVHD. We just wanted you to know that our Sophie had GVHD grade 4 of the skin and has now almost fully recovered so there is always hope. She now only has occasional small rashes on her hands and feet which respond well to steroid cream. We hope that Christopher responds well to his new medications. We are checking in on you everyday and you are always in our prayers. Padraic & Tina
Email:chriscln@erols.com Comments:My heart aches for your family and my mind is full of constant prayer for all of you. You have such strength and courage and most of all, faith. Hang on, tomorrow will be a brighter day. The Campbell Family, Chris, Lori, Nicholas, Caitlin, Brody and Kellen (CUMC)
Email:ltjpost@cox.net Comments: It's ok to have a down day or two and feel your prayers are going unheard. Let me assure you that no prayer is unheard. It's just that sometimes our worries and fears stand in the way of experiencing God's supportive answers. He is with you, He is listening, but He also wants you to trust Him. It might be Him speaking through someone else, or a song you hear, or a thought or feeling you have. He has not abandoned you and He has not abandoned Christopher. "Let not your hearts be troubled. Trust in God and Trust in Me." John 14-1 That verse helps me everytime I start thinking I can't handle what is being asked of me. It is also a load off my shoulders to know that I am not alone. He really can handle things for me if I let go and let Him. Christopher will recover from his GVHD. I know you are scared he has it, however, I am always more worried when post-transplant Hurler children don't show any signs of that dreaded rash...usually you find out they haven't engrafted. So it is a double-edged sword. In one respect it's a good sign he has it....what to pray for now is that it doesn't worsen and it doesn't go beyond his skin. He continues to be in my prayers! Hang on for the ride and DO NOT loose your positive outlook!!!! Lisa Post
Email:daisy@vanopstal.com Comments:Paige and Joe, Your entire family is often in our thoughts and prayers. Daisy trys to check your updates at least once a week and was so sorry to hear about Christopher's current GVHD setback. However we truly believe that it will be only a temporary setback as we know what a fighter and a miracle child, he is. We are sending a big healing hug to you all. With God all things are possible. Warmest thoughts, Daisy, Bill, Will and Molly van Opstal
Email: Comments:H I , I check every day to see how Christopher is doing ,so glad things went good today , i know it is not easy when your baby is sick ,i will say a pray for all of you ,my grandson also had hurler;s so take care ,love stella carters grandma.
Email: Comments:H I , I check every day to see how Christopher is doing ,so glad things went good today , i know it is not easy when your baby is sick ,i will say a pray for all of you ,my grandson also had hurler;s so take care ,love stella carters grandma.
Email:selboc@aol.com Comments:
Email:selboc@aol.com Comments: Paige, I feel your pain... wanting so desperately to get back to a 'normal' life. I remember wanting to take ^^REESE^^ home and get out of that blasted hospital room. But, PLEASE, don't rush it. You have no idea how many times I'd wished they would have kept him in that hospital just two more weeks - - maybe then he wouldn't have caught that virus... I don't know. I DO know this... stay until you KNOW he's ok. Watch what you wish for... I remember wishing I could just sleep in my own bed and I got that wish too soon... because I did not have my little ^^REESE^^ to snuggle in that bed with me. I'm not belittling your grief in being trapped in a hospital room.. I'd give anything to be stuck in a 10x10 room as long as my son was still here. Just be patient and let Christopher determine when it's time to be released. It will be a year this March 10 since ^^REESE^^ went to be with the Lord and I hope you NEVER have to live with losing Christopher. He's a special little lad and I pray he does OK.. and YOU TOO! Although I don't sign everytime I visit, I do visit every day! Hang in there and keep your chin up.. Sending hugs from NC... Shawn Coble mother of ^^REESE^^ @ www.caringbridge.org/nc/reesecup
Email:www.caringbridge.org/il/tonythetigre Comments:Hi Paige and Joe, My name is Gina. My son also has Hurler's. I justed wanted to let you know you are in my thoughts. Gina
Email:beni971@bellsouth.net Comments: Dear Paige, Joe and Christopher, I know you've heard this many times before, but it's worth repeating--everything is going to be allright! God never starts something He can't complete. You are conquerors...conquer means "to get the better of in a competion or struggle, to master, prevail over, to crush" Jesus gave us more than a ticket to Heaven! Through Him we are more than conquerors over whatever this world throws our way. Through Him you have overcome, mastered and prevailed over this world. Victory means "final and complete supremacy or superiority in battle or war, success in any contest." You are victorious and the evidence will soon be made manifest in Christopher. May the Prince of Peace grant your family His Peace and Comfort as you continue in His Word. God Bless you all. Love, In Him, Aunt Terry and all.
Email:selboc@aol.com Comments: Just dropping by - as usual - to read about Christopher's latest adventures. I got a kick out of reading about your travels to the light therapy. I remember trying to just get Reese out of his room to the rocking chair out in the hall.. I can't imagine trying to get him to another building! I'm also VERY thrilled to hear about his 100% engraftment! That is such wonderful news. And the crankiness - that could be the female in him now!! LOL that's what we always said when Reese was fussy! I remember some nights when all he did was scream and scream.. and NOTHING could satisfy him.. I guess he was just SO miserable. But that didn't last that long so there is light at the end of this moody tunnel. Thanks for doing such a great job with your updates. Christopher has become a part of my regulare routine... he's the first one I check on in the mornings now - after I check Reese's site. You all are certainly in my thoughts and prayers. Please give Christopher a big Snoopy kiss and hug from North Carolina. God bless....
Email:arhimes@msn.com Comments:I am glad that the GVHD is looking better. I am glad you are down to one pole. We never had two but I remember how sad it made me to sit out in the hall and see another pole being rolled into a child's room. I knew it ment that he was very sick. As to traveling with a pole, that I know about. We had red cars the kids could sit in and be pushed with a handle. It was a real art to get that thing moving along with the pole. It took a little fancy foot work and some hip action. I hope things will be getting easier and I am glad you are keeping your sense of humor. Love, Anne
Email:arhimes@msn.com Comments:I missed your engraftment news on Fri.CONGRATULATION!!!!!!! Yea, Yea, Yea. It sure makes everything else easier to take. I am so happy for you. Love, Anne
Email:beni971@bellsouth.net Comments: Hey precious ones, we are with you in spirit...I realize you have nothing earth shattering to report but that is good news. The counts look very good and I didn't read anything about the skin so it must be better. We're so proud of all of you, you have really been through the mill but you are hanging in there. Know that we continue to lift you up in prayer before the Throne and God will continue to bless you and keep you strong in His might. All our love, Aunt Terry et al.
Email: Comments:Paige and Joe, We think the doctors really gave Christopher some Energizer bunny juice in those I.V. bags!His hair has to grow in a Halo shape,to remind everyone that he REALLY IS an angel!LOL.Glad to see that his skin is clearing and he is doing better.Hang in there, Love,Pete and Lori
Email:padraic@melroseroad.co.uk (Sophie's Dad) Comments: What a wonderful update. I am so happy that the GVHD has improved, it is nasty stuff. Hope you can all get some sleep soon. Padraic (Sophie's Dad)
Email:arhimes@msn.com Comments:I am so glad that things are going better. Watch the potassium levels with the bananas. Maybe he isn't getting enough to do anything but the first thing Andrew did when he got out of the hospital was to eat a 1/2 a banana (we were so excited) and his potassium level went right through the roof. Ahhh. Oh well, they will let you know. It sounds like things are moving in the right direction. Love, Anne
Email:CARINGBRIDGE.ORG/IL/AARONATHY Comments:The blessing just keep flowing in!!!! It's kinda weird to think how happy we are when our child starts making his own blood and plateletts!!! See it is true, we will never take our Hurler babies for granted!! Everything they say and do now will be a miracle in our eyes!!! We are the lucky ones because God choose us to see something very few people will ever see, his MIGHTY POWER!!!! Well, I hope you guys get to bust out of there soon. I WILL KEEP MY FINGERS CROSSED!!! XOXO, Trisha
Email: Comments:Paige and Joe, something good is happening....I can just feel it. Jinx is a good word in my family, my sister, Jinx, was born on the 13th, and just maybe your little guy will be out of there on the 13th.. Love, Denise
Email:beni971 Comments:Dear Paige, Joseph and Christopher, Things are starting to look up. I wish you could get a photo of Christopher wearing his shades. It is so great that you both have a good sense of humor. Sometimes a sense of humor is all we have during times like this. I feel that the worst is over and as each day passes more and more progress will be made. I do hope you can get some rest now that Christopher is beginning to sleep. I have to chuckle about the bananas--everyone loves them why not Christopher. He has good taste. Hope you both get an opportunity to rest some tonight. I prayerfully await the morning report. All our love, Aunt Terry et al
Email: Comments: Just wanted to say that we are thinking about you all the time. I hope that you got the pictures we colored for you for his room. It was so long since I colored a picture but it felt great because I knew that it was going to brighten up his room. I am going to try to make a trip up there soon. Andrew is a hand full right now so it makes it hard. My prayers and thoughts are with you guys. Love Sarah, Jimmy and Andrew Layne
Email: Comments:Good Morning to you all, We figured that you couldn't do an update because you are too busy moving!Whether or not today is discharge day --Christopher is doing very well and we are all excited about the day he actually does go home--to your home in Virginia. From the time frames we read before treatment started, it seems like you are all right on target. Christopher truly is a miracle baby and we know the Lord will see you all through as Christopher's body manifests the healing power of God. Stay strong and know you are always in our hearts and prayers. Love, Aunt Terry et al
Email: Comments:
Email: Comments:Hi All, We're thrilled you are discharged today! I'm sure you both feel very apprehensive about taking your precious Christopher home. Just remember, he's been in God's Hand thus far and you all will continue to be nestled in the bosom of the Lord, so you are simply changing "addresses". Our prayers continue to go forth on your behalf and as a favorite church song goes, "...He didn't lead you out this far to bring you back again..." God is good all the time, and His manifest glory is seen in Christopher's healing. We love you. In Him, Aunt Terry, Uncle Bernie, Anne, Liz and Gary
Email: Comments:So thrilled to hear you are finally out!Christopher must have been amazed to be outside again(even if it is freezing!....)This change of scenery will do you all wonders.Congradulations, Pete and lori
Email:arhimes@msn.com Comments:I am so excited for you!!!! I love hearing how great Christorpher is doing. I can just feel it in your voice. I hope that one day we will be able to meet in person and share our wonderful boys! Love, Anne
Email:maureen1360@cox.net Comments:Dear Paige & Joe: Congratulations on discharge! Praise God, from whom all blessings flow! Fondly, Maureen Cook (CUMC)
Email:tina@melroseroad.co.uk Comments:Congratulations on discharge. It is wonderful news. With the Skin GVHD Sophie started to hate baths and putting any cream on. When it was at it's worse just exposing her skin to the air made her scream. Maybe Christopher skin is still a bit sensitive. Love Tina.
Email: Comments: Hey guys! What an exciting day (and week) this must be for you! Hopefully life is feeling a little "normal" and you're enjoying being together as a family. Just to have some uninterrupted time with each other must be pretty amazing! We're sure thinking about you all the time! Lots of love, Ange & Bubba
Email: Comments: We visited you yesterday with the dogs from Fidos For Freedom, Inc. We just wanted you to know that you all are in our prayers and thoughts; we wish Christopher a life filled with joy, happiness and good health. Take care- Debbie and the collies
Email: Comments:Dear Each of you, It sounds as though you were discharged right on time! Enjoy each other--it must feel great being together out of the hospital setting. Give Christopher a great big hug and kisses from his Great Aunt Terry and Uncle Bernie. Anne, Liz and Gary send hugs and kisses as well. We love you and you will continue to be in our prayers. Love, Aunt Terry
Email:ltisinger@yahoo.com Comments: I'm so very happy for you all, especially Christopher. I'm often afraid to look at the website for fear of bad news. But I'm so glad I took a peek today. The news of Christopher's discharge brought tears to my eyes. Congratulations. Love, Laura (Queen)
Email:ltjpost@cox.net Comments: Congratulations on discharge!!
Email:mmchick@comcast.net www.Mighty-Max.com Comments: So glad to hear the good news.
Email: Comments:Paige,Joe,Christopher: It was so good to hear that Christopher was discharged on Sunday. Praise God. We will continue to pray that the GVHD does not flare up, the skin rash will subside soon and the blood pressure will stabilize. We will also keep the other litle ones in our prayers. May God of all mercy give you all His GRACE. In Jesus name.....Gai
Email: lucalara@lycos.com Comments: Hi Paige and Joe. Upon reading all of this from christopher's website. I really admire you both for all the things you'd gone through. When both of your children has chronic illness that he will indure for life like with me and Rod, as parents you really don't know what to do. You always wish that it would go away and wish they will lead a healthy life. As they grow you try to protect them and feel guilty why you gave it to them. You try to explain to them why they cannot play contact sports, why they have to go to the hematologist/oncologist for IV DDAVP infusion before they have to go to the dentist for filling or tooth extraction. Why they have to wear a bracelet that they have bleeding problem(so just in case they get into an accident they will know). On occassion I hear my oldest why he has this disease. As a mom, it hurts, I always say I wish it would go away, but it can't. What help me a lot is my prayers. I leave it the Lord, I know he hear as and his the one that always give me the strenght to go on everyday when I'm down and thank him when I'm happy. I thank him always for all the graces and blessings he gives us. So Paige and Joe always be strong and when your day is down or happy call him. Our children are more stronger than we know it. They are fighters and they are the ones that always gives us strenght everyday. Everybody in the hospital are praying for you. Stay strong and keep similing. Remember we don't want to have sad wrinkles always smilling wrinkles. God Bless to both of you and Christopher. Leida Calara
Email: Comments: Good Morning to you all, Glad that Christopher is eating and sleeping. The other issues and fears you addressed are now prayer requests. May the God of all Comfort and the Father of all Mercies minister to you all and cause this time to be peaceful. Being out of survival mode is truly a different phase--other issues that seemed insignificant during crises time surface and have to be addressed. The good thing about all of it is that you have survived the crisis and are moving on to the next step. Stay strong in the Lord and the power of His might--He's been with you all thus far and He will not abandon you. He will see you through, especially Christopher. His Hand is on Christopher and He will never let go -- God will meet all the needs you have and give you Peace. We will continue to pray and confess God's truth over Christopher. Love and prayers, Aunt Terry et al.
Email: Comments: PS from Aunt Terry...Grandpa Joe and Grandma Ann sent us e-mail photos of Christopher on Discharge Day--he's still as beautiful as ever. We were glad to see the photos. His smile is bright and he looks wonderful. Love and hugs.
Email: jpmigliozzi@m3tc.com Comments: Welcome to the fixed Guest Book :)
Email:padraic@melroseroad.co.uk Comments:I am so happy that you managed to have a meal out as a family.It's got to be nice to do something "normal" for a change. I hope Christopher's teething doesn't upset him too much. I know how hard it is checking temperatures every hour and hoping that they stay below the "hospital admission" limit. Love Padraic, Tina, Amy and Sophie (MPS 1H)
Email: Comments:Dear Paige and Joe, We just received the card and photos.Thank you so much!Are we biased,or is Christopher just a little pumpkin?!!!!!It was so nice to hear from you.I know it is so hard right now,but try to take your outings more often.Christopher probably needs the change in scenery too.Keep doing what you are doing,and remember how FAR YOU HAVE COME.It was only a few short months ago that you were given such a horrible scare with the news of Christophers illness.Now Christopher has been blessed with a new beginning.In a couple of weeks,he will celebrate his first birthday.How glorious and momentous an occasion!This is truly a miracle!!!With all of our love, Lori and Pete
Email: Comments:The transplant photos are beautiful.Christopher looks wonderful!Thanks for taking the time to share them!! Love, Pete and lori
Email:daisy@vanopstal.com Comments:Dear Paige, Joe and Christopher, We love the new pictures...thanks for sharing them. Christopher is still as handsome as ever. We think of you often. Love, Daisy, Bill, Will and Molly van Opstal
Email:carahaney@aol.com Comments: I love the transplant pictures! What a good looking future Hokie you have there. Love, Cara
Email:jbracco@bellsouth.net Comments:Dear Paige, Joe, & Christopher - All of you are an inspiration and will make it!! We can see in Christopher's eyes that he will soon be running around at home with other little ones his age. We will be praying for you everyday & with each step of the way. Love, John & Susu Bracco (Nursing School classmate of Grandma Ann)
Email:jbracco@bellsouth.net Comments:Dear Paige, Joe, & Christopher - All of you are an inspiration and will make it!! We can see in Christopher's eyes that he will soon be running around at home with other little ones his age. We will be praying for you everyday & with each step of the way. Love, John & Susu Bracco (Nursing School classmate of Grandma Ann)
Email:mmchick@comcast.net ww.Mighty-Max.com Comments: Christopher, so sorry to hear you are back in the hospital. We hope you feel better soon.
Email:arhimes@msn.com Comments:I am so sorry that Christopher is back in the hospital. I hope they get things undercontrol soon and that he is feeling 100% better. I know hospital life is hard. I will hope it doesn't last very long and you will be back on track. Love, Anne
Email: Comments:Thanks so much for posting the transplant photos...Christopher looks wonderful. We are sorry to hear that Christopher had to be re-admitted to the hospital--but 48 hours goes by very quickly compared to the months you were confined there. We continue to thank God for His awesome healing power and for peace and comfort for your family. All our love, Aunt Terry and all.
Email:padraic@melroseroad.co.uk Comments:I am sorry that Christopher has been readmitted. Sophie is 210 days post transplant and was admitted to our local hospital on Monday as she had a high temperature. She is still there so I know how frustrating it can be. I hope that Christopher can go home soon. Love Padraic, Tina, Amy and Sophie (MPS1)
Email:slimpikens1@yahoo.com www.caringbridge.org/il/cademateo Comments:Just stopped in to check on Christopher, have been reading his updates, my first time signing. My son has MPS1, he is 3...Please know that I will keep all of you in my prayers and hope your out of the hospital soon. Love, Nikki & Cade Morrissey
Email:arhimes Comments:You are such a good mommy. I am sure Christopher feels better just knowing you are with him through whatever. I am so glad to hear about the fever being gone. We will keep praying until the tummy problems go away too. I hope you will be out soon and that Christopher will be 100% in a jiffy. Love, Anne
Email: Comments:You don't know me but I've been keeping up on Christophers story for months now. I have 2 little boys myself and I pray and hope that everything will turn out for your family. Christopher seems like such a little warrior. For some reason I felt drawn to your story and have been keeping up on your updates. I wish you all the best of luck in your journey. BB-Ohio
Email:beni971@bellsouth.net Comments: Hi All, Each day things will get better. We were very grateful for the photos, I realize you don't wish to commit Christopher's sick time to photographs but he will never know how far he has come if he doesn't have a measuring point to see where he was. Twenty years from now, Christopher will see how much resiliency the human body and soul has. He will see how much Love he enjoyed from his parents, and family and a host of friends and strangers. Most of all Christopher will see the awesome power of an all powerful, all merciful, all gracious God who loves him beyond all measure. May the Resurrection power of the Lord Jesus Christ be with you all as you continue on this healing journey. With our love, Aunt Terry and all
Email:alicecurran@charter.net Comments: Dear Christopher and sweet Mom and dear Dad, The first thing I do each day here in Fort Worth, Texas is check your sight. You, little Christopher have been a daily presence in my prayer. I follow your mommy's updates religiously, and am pulling for you little one! What a special child of God you are! What a miracle you are! What courageous and beautiful parents God has chosen for you! Your Mom is such an inspiration; she is such an authentic and special lady. I cannot imagine her and your Dad's life this year; they have special blessings from God to have cared for you so courageously and tirelessly. ( I think you all are due a wonderful vacation some years down the road when you are running so fast they will not be able to keep up with you! ) My vision of that day is offered to God in anticipation of its coming to be! Butterflies and birds, sunshine and rainbows and you and Dad and Mom enjoying the day in utter thanksgiving for the lavish love of a God who walks with you as you await that special outing as a family. It seems the whole world has you in prayer Christopher. Imagine all the people you may never meet praying for you and loving you. I know your Uncle Matt and Aunt Michelle, that is how I came learn about you. You are loved little man, and I am praying you can be home when you celebrate your very special first birthday! By the way, love is an awsome thing, We can love each other not even knowing each other..that is because the love of our God is so very big! Please give my love to your Mom and Dad and all your Grandmas and Grandpas and Aunts and Uncles, and all who are close to you.I send my love. and prayers continue..I will keep checking on your progress and healing! Blessings, courage and peace of heart to all, Alice Curran
Email:jdownham@earthlink.net Comments:I've been keeping up with your little Cristopher's story for a couple months now, and it just hit me, do you know about the MPS forum? it is a wonderful place for support and friendship with other parents of MPS Children. It is also a great place for information as there are many children on the forum who have had CBT and BMT and who are on ERT. Stop by sometime- if you havn't already. www.mpsforum.com By the way, Christopher could not be any cuter!!! what a doll. Don't worry about his bald little head- you are right it is his badge of courage and he wears it well! Our prayers are with you. Love, Kim and Ty Downham
Email: Comments:Paige and Joe, I do not know you personally but I am a member of CUMC and I read your web site every day. You both are a true inspiration and very special parents. I pray for the three of you everyday. God bless you all, Margaret Chekan
Email:maureen1360@cox.net Comments: Dear Paige & Joe: In case someone hasn't told you already, Pastor Don mentioned you in his Easter sermon as a living example of strength & love despite sorrow. Your CUMC family continues to hold you close in prayer. Warmly, Maureen Cook
Email:carpathienblue@yahoo.com Comments:<center><a href="http://www.quiltsoflove.com"><img src="http://www.quiltsoflove.com/cards/hugs/jean7.jpg" border="0"></a></center> He is SUCH a cutie PIE!:) I hope you get to go home soon! That would be so Wonderful for you! Hugs and Hope, Love and Prayers to you from us! QOL <a href="http://www.caringbridge.org/ut/fti">Aisalynn</a>
Email:Paige,Joe&Christopher Comments:I am so sorry to hear that Christopher is back in the hospital. The men's group at Church prayed specifically that our Lord Jesus will heal Christopher's kidney infection. We pray that He will give you faith to continue to trust Him, no matter what. We also pray for wisdom for the doctors and nurses at John Hopkins, who are treating Christopher. Hold on to the promises of God in the Bible. Love...Gai
Email:arhimes@msn.com Comments:I am so sorry to hear that Christopher has run into a new problem. I am glad that is was caught now and hope that will make it much easier to treat. We will be praying for you. Love, Anne
Email:gcimarru@riroe.k12.il.us Comments:Paige and Joe, We were also at the point in our lives when we wanted our son Anthony(hurler baby) to have a life outside the hospital. He has been home now for 3 months. He runs(with a walker)laughs and plays like a normal child with his twin sister. The day will come and it will be everything you ever dreamed of!!! Gina (caringbridge-Tony the Tigre)
Email:jandjstone@verizon.net Comments:Paige, Christopher is a true fighter. I enjoy reading your website on him and it's good to know that he is still fighting. I am sorry that his first birthday will be in the hospital but I am very happy that he can celebrate his first birthday. Christopher, you and your entire family are in my thoughts and prayers. Please know that you have a ton of supporters especially when things get to be tiring and stressful. ZLAM, Jennifer Stone (Blank)
Email:beni971@bellsouth.net Comments: Dear Each of you, The latest reports may not sound good and as you are both aware, the reports change each day, perhaps each hour. Please remember, the God in whom you have placed your trust and Christopher's life NEVER changes, He's the same yesterday, today and forever and His Healing Hands are holding Christopher. Keep your eyes on the Prize, the full manifestation of the Healing that Jesus gained for Christopher on Calvary and secured it by His Mighty Resurrection. Our prayers are with you constantly. May the Peace of the Lord Jesus encompass you all as you pass through this latest rough patch. This too shall pass! In His Love and Mercy, we love you, Aunt Terry and Uncle Bernie.
Email:lauriejo.hesson@nextel.com Comments:I will keep your family in my prayers....my sister just celebrated her fifth bone marrow transplant birthday....there are a lot of trials and tribulations you go through during the recovery, but I truly believe if you keep a positive outlook and you have many prayers coming your way your son will come through...you just have to believe! I donated bone marrow two years ago to a little seven year old girl.....I hope your story encourages more people to become a registered bone marrow donor. People always ask me, "would you do it again?" and I say YES! with no hestitation. May God bless you and your family, and please let me know if there is anything else I can do. Laurie Jo Hesson, Eta Xi, Alpha Lambda pledge class
Email:nicole.mendoza@vastera.com Comments:Paige, It's Niki Lare Mendoza. I just got an email that originated from Shana Kellam. I had no idea your family was going through such a struggle. I am so, so sorry. I've been reading through your site and I am amazed at how you have been handling everything. You are an amazing woman and mother. You, Joe, and Christopher will be in my prayers. Take care of yourself and of that beautiful little boy! And Happy Birthday to Christopher! Niki
Email:tina@melroseroad.co.uk Comments:I am sorry you are back in hospital. It is so hard when the days turn into weeks and the weeks turn into months. Towards the end my other daughter kept asking why our family was broken, I had no anwsers. How do you cope? I do not know, you just do because there is no other option. We are praying for you all. Love Tina,Padraic,Amy + Sophie
Email: Comments:Dear Paige,Joe, and Christopher, I'm so very sorry to hear about another "bump in the road" on Christoper's long journey. I'm praying that everything goes well with the bronchoscopy and that you will be home soon! I know you are disappointed that you won't be celebrating Christopher's 1st birthday at home, but I'm sure there will be many other birthdays and holidays at home. You've come so far - it is just so wonderful to celebrate this milestone no matter where you're located. And just think, Christopher will be able to celebrate two "birthdays" - one on April 24 and his transplant day! All his friends will be jealous! Take care of yourselves - we're praying for you! Betty Williams (Salisbury Presbyterian Church)
Email: Comments:Dear Paige and Joe, Pete and I continue to hold all of you in our hearts and our prayers.Christopher is strong(just like his mom and dad)We have faith that he will pull through all of this.His birthday will still be a special day,even in the hospital.Package is coming.... All of our love, Lori
Email:mmchick@comcast.net www.Mighty-Max.com Comments:Christopher, we hope everything goes well inthe ER today.
Email:daisy@vanopstal.com Comments:Dear Paige, Joe and Christopher, I just wanted to let you know I said a special prayer for all three of you this morning. May you feel my long distance hug too. Love, Daisy
Email:alinkous@kpmg.com Comments:Paige, Joe & Christopher - I want you to know that every day I check this website and every day I pray for you. I am so sorry things are not going well. Christopher has shown he is a fighter and I am confident he will fight through this. You give me such inspiration of strength and courage. Please know there are more people than you realize that are checking this website and praying for you. You are in my thoughts and prayers. Love, Ashley Linkous
Email: Comments:Dear Christopher, Paige and Joe, When cicumstances seem like they are never going to get better -- remember this -- God's promises are not influenced by changing circumstances. Circumstances may change but God's Word is unchanging. Full and complete healing is Christopher's and regardless of what the circumstances say, God's Word says that Christopher is healed by the stripes of Jesus. Stay in the Word and don't let what you see influence your Faith. Circumstances may lie, God's Word is always true. Ask Jesus to give you His Peace and Rest in Him, it is a rest that surpasses all human understanding. We love you and know that you are in our daily thoughts and prayers. Happy First Birthday to Christopher, I know you are not at home where you were hoping to be but God knows where you are and He will bring it to pass. Love, Aunt Terry
Email:mbryant@cox.net Comments: Christopher, Paige, and Joe, you are all in my prayers. The website is amazing....such a labor of love! Stay strong and know that many people are lifting you up in prayer. Give Christopher a 1st Birthday kiss for me. Marlene (Brad's mom)
Email: Comments:Dear Paige and Joe(baby Christopher especially), You have the prayers of so many.We all want the same things for Christopher-to have a good recovery from his surgeries,positive test results,and many happy,fun-filled days spent at home with his family.Lets all continue to focus on that.Sending much love, Pete and Lori
Email:arhimes@msn.com Comments:I am so sorry you are having such a hard time. I hope Christopher will be out the the PICU and up and around in no time. I know this must be very hard on you. We are praying for you all. Love, Anne
Email:mwinter@jhmi.edu Comments:hi guys, it's MH, the peds. OR nurse(surgery date 4/22/04).the website is great!! glad to see that things are looking good and the plan for today is to send christopher to a unit where schedules are more realistic. keep your chin up, you are good eggs!! all the best....MH
Email:realrobin3271@aol.com Comments:Hi Paige & Joe just wanted to sayhiand let you know that we are all praying for christopher. Hope that you are all well. May God bless and watch over all of you always ( This is Linda's sister Robin......Mariah's grandma) Stay strong and keep the faith Love, Robin and Family
Email:tina@melroseroad.co.uk Comments:So glad to hear Christopher is off the vent. Love Tina,Padraic,Amy+Sophie
Email: Comments:Great News on Christopher's Birthday! What a wonderful gift! I believe healing is a series of miracles and step by step the body is made whole. Christopher's miracle is unfolding each day as God defeats the odds on Christopher's behalf. Please stay peaceful and rest in Jesus' arms as you stand strong in the midst of a mighty battle. We are continually praying for you all and thanking God for His grace and mercy. Love, Aunt Terry and all.
Email:arhimes@msn.com Comments:Way to go Christopher. That's our boy. Love, Anne
Email: Comments:HAPPY 1ST BIRTHDAY CHRISTOPHER !!!!!!!!!!!!!! LOVE, Pete,Lori and kids X X X X X X X X X O O O O O O O O O
Email:carahaney@aol.com Comments:HAPPY 1ST BIRTHDAY CHRISTOPHER!!!! Love, Cara Haney and Family
Email:otpera@verizon.net Comments: This has been a tough week for all of you, try and stay strong, we are praying hard every day. Please give Christopher a kiss from us on his first birthday. All our love, Matt, Michelle, and Grace
Email: arb8@hotmail.com Comments: HAPPY 1ST BIRTHDAY CHRISTOPHER!!!!!!!!! LOVE, ANNE (Joe's cousin from GA)
Email:daisy@vanopstal.com Comments:Happy 1st Birthday to Christopher!You are such a trooper and our inspiration. I know that he will soon be teaching Will a few tricks too:)! Give your parents lots of hugs from us too. Love, Daisy, Bill, Will and Molly
Email:dslevin@adelphia.net Comments:Happy Birthday Christopher! Keep fighting ... we are so proud of you! Happy "Birthing" Day to you Paige (and Joe) ... Christopher could not ask for better parents! Keep up the great work!
Email:www.Mighty-Max.com Comments:Happy Birthday Christopher!
Email:tina@melroseroad.co.uk Comments:Glad you could celebrate Christopher's Birthday in a small way. We are all praying for you here in London. Love Tina,Padraic,Amy+Sophie.
Email:CARINGBRIDGE.ORG/IL/AARONATHY Comments:I guess you don't have much of a choice when it comes to coping with things!! You just have to take what you are given and try to make some sense out of it. As long as Christopher has you as his parents he is perfectly content!! As long as he knows you are by his side he will feel safe. HAPPY FIRST BIRTHDAY (Late), Christopher!!!! May many many more Birthdays head your way!!!!!!!!!!!!!!!!!XOXO, Trisha Athy
Email: Comments: Great to hear that Christopher is responding to the meds. He's a tough little fellow and the end result of all of this will be inspiring. Christopher may have had a difficult first year but suffice it to say he's made it this far. Grandma Ann and Granpa Joe told me that Christopher is a fighter, and even though he looked very ill when they saw him on the weekend, they know he will rally. It was great to hear a first hand report! We are all praying and holding on to God's promises for Christopher and you all. Love you, Aunt Terry and All
Email:selboc@aol.com Comments: Happy Belated Birthday little Christopher! I hope you're doing well. I can't seem to get the latest update to show up. For some reason, it's always stuck on Feb 10 or April 20. I'm worried and would love to know how you're doing. Stay strong and catch those kisses from your buddy, ^^REESE^^, in heaven. We are praying for you! Shawn, Taylor, & ^^REESE^^ Coble www.caringbridge.org/nc/reesecup
Email:arhimes@msn.com Comments:Happy Birthday Christopher!!! I am positive the next year will be easier. Try to stay away from the PICU will you. I know the care is great but... I am sure you can find another way to get attention with all the people who love you. Take it easy and get better soon. Love, Anne
Email:jdownham@earthlink.net Comments:Christopher is in our thoughts and prayers. Love, Kim and Ty Downham
Email: djvpool@frontiernet.net Just wanted to let you know your friends on the MPS Forum are keeping you in our thoughts and prayers. With love, Debbie, Rich, Jon and Jason Vanderpool (Jon and Jason have MPS IIIB)
Email:padraic@melroseroad.co.uk Comments:I'm so glad Christopher is out of PICU and I hope everything improves from here. Love Padraic, Tina, Amy and Sophie
Email:wchico@nyc.rr.com Comments: I have been watching this site for updates for the last 2 weeks. Christopher is sucha cutie pie. I pray for him everyday. Please keep the faith.
Email:selboc@aol.com Comments: Still checking in.. still loving you.. and still praying for you. Hang in there! Shawn, Taylor, & ^^REESE^^ Coble www.caringbridge.org/nc/reesecup
Email:taylorkh@unos.org Comments: Keep the faith and stay strong. You are in the prayer of all us at UNOS (United Network for Organ Sharing). Just believe and everything will be alright.
Email:bpryor1@columbus.rr.com Comments:Dear Christopher and Family, I hope that you start feeling better real soon. I know that it is tough but keep fighting. There are a lot of people cheering for you. My nephew, Andrew has MPS II, Hunters. we know what you are going through. We will keep you in our thoughts and prayers.
Email: Comments: It was good to learn that Christopher is finally out of PICU. We continue to pray and lift up all of you in prayer each day. Stay strong and don't let what you see and hear get you down, God is on the job and everything will be allright. Rest in Him and let His retorative Grace be your constant companion. We love you, Aunt Terry and all.
Email: Comments:Joe and Paige, It is only natural to feel down considering all that Christopher is going through.But believe that he will get better,and he will go home!Remember,nature has a way of protecting children ,and all of this will leave Christophers mind.Just the parents get TORTURED forever!!!!!LOL.:-) You have a lot of people to lean on,and each other,and you will recover too.Time and distance will be your healers,as will your faith in God and His ability to heal your little family and to carry you through this rough time.As soon as Christopher is feeling up to it,we want a photo in "the outfit".He is too handsome and I want to bite him up. Love, Lori(and Pete)
Email:judithsween@aol.com Comments:Dear Christopher, Please know that we are praying for you and your family and that we check on you everyday..Love from Chicago...Mighty-Max's Granny
Email:TLSlawson@aol.com Comments: I have been reading Chistopher site since you started. I'm sorry this is my first post! Please know your in my prayers. You have so many people praying for you and we are praying for a miracle! I pray Christopher beats this yucky disease!! Love and Hugs Tami www.caringbridge.com/ca/slawson (MPS1)
Email: Comments:Hi Guys, After your last entry have been so worried for Christopher.Hope he is o.k. Pete&Lori
Email:slimpikens1@yahoo.com www.caringbridge.org/il/cademateo Comments:Keeping you all in my thoughts and prayers! Love, Nikki & Cade Morrissey
Email: Comments:YOU CAN DO THIS...KEEP FIGHTING!..We are praying every day, all our love, The Dates
Email: Comments: Just want you to know that you all are still in my thoughts and prayers. This is an unimaginable struggle for those of us who have been blessed with healthy children, but I can feel your pain through your words. Please don't give up hope, even though you all are emotionally and physically exhausted - "where there is life, there is hope." Thank you for sharing your story - it is a lesson in so many ways for all of us. MBeitner - SPC
Email:judithsween@aol.com Comments:Dear Paige and Joe, We are all praying for your precious little boy...Love from Chicago...Mighty-Max's Granny and family
Email:TLSlawson@aol.com Comments:Please know everyone is praying for chistopher!!!!! I check many times a day and I'm praying his kidneys start working and he beats this yucky disease!!! Hugs, Tami Slawson ( www.caringbridge.com/ca/slawson )
Email: michelle.shirkey@ps.net Comments: Paige, Joe, and Christopher, please know that you are in everyone's thoughts and prayers. Your strength is an inspiration. - Michelle (Frye) Shirkey
Email:labro4will@yahoo.co.uk Comments: We are praying for your little boy and hope there is some better news soon-stay strong Best Wishes and Love Laura Brodie (Mum to Will MPS2)
Email: ezekiel_prorok@hotmail.com Comments:I have been following Christopher's website for months and pray for him daily. I came upon your website by accident, because a friend has a daughter with Hurler's. Don't give up hope! My friend and his wife went through many dark days after the transplant, days when there seemed to be no light at the end of the tunnel. That was three years ago. Today, their daughter is a happy little girl that goes to school like any other child. So don't lose hope! Things will turn for the better!! Praying for you and Christopher, Mike Baresich. New York.
Email: Comments: Don't be dismayed! Please don't focus on what you see, that is a primary source of the enemy. Faith is believing when we cannot see the end result. Christopher is in God's loving care and we are standing with you in Faith that what God said He would do He will do! When you have done all, STAND! That is the most difficult part, we are praying and trusting God that he will give you both the strength and patience you need to stand. Receive the Peace that only the Prince of Peace can offer, the Peace that passes all understanding in Jesus' Mighty Name! Love, Aunt Terry
Email: Comments:Praying for you and checking on you. Pete and Lori
Email:nicole.mendoza@vastera.com Comments:We continue to pray for your family every day! I can't even imagine how hard it must be for you to see Christopher this way, but I am always amazed at how strong you have been. You are an inspiration to moms everywhere, including me. Know that we are all praying for Christopher's recovery. Love, Niki (Lare) Mendoza
Email:steveandjill2@hotmail.com Comments:I don't kow you or your family, came across your web site from a friend of yours. My family is praying for you little guy on a daily basis. Your strenght is an inspiration. Hoping Christophers kidneys start working and that you guys can go home soon. Jill, Steve, Vanessa & Emily
Email:www.Mighty-Max.com Comments: Christopher, we are pulling for you so much. Paige and Joe, you are doing a great job. Keep fighting little guy! You CAN do it. -Margaret Ciacciarelli
Email:jdownham@earthlink.net Comments:Christopher, we are praying for God's healing touch for your kidney's and for your transplant and ERT!!!! God is Good, and He loves you. Love, Kim and Ty Downham
Email:jules522@adelphia.net Comments: I heard about your little boy on Babycenter.com. I am praying for him and your family. Stay strong and don't lose faith.
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Email:tina@melroseroad.co.uk (www.melroseroad.co.uk) Comments:I so am sorry you are heading back to PICU. We are praying for you all. Love Tina,Padraic,Amy+Sophie
Email: padraic@melroseroad.co.uk Comments: Hi Christopher, we are praying for you. You are always in our thoughts. Padraic, Tina, Amy and Sophie
Email: kris@mpssociety.org ( www.caringbridge.org/il/kraig/ ) Comments: Christopher remains in my thoughts and prayers. Stay strong, Christopher, you have many many people praying for you. God Bless! Kris Klenke
Email:jennmarie@bis.midco.net Comments:I am praying! I have followed Christopher since he started his transplant, and I am so sorry that he is going through all of this. I will say many many extra prayers for you today. Thinking of you, Jennifer Restemayer www.caringbridge.org/nd/allison
Email:buzz.cairns@sympatico.ca Comments:I am so sorry things are taking a turn for the worst please know that you are in our prayers Anne Cairns
Email:selboc@aol.com Comments:I wish I could offer words of encouragement and tell you all will be just fine. I wish I could be there to hug you and tell you I understand what you're going through. Instead, I can only send sign in your guestbook.. a stranger who has been in your shoes... to tell you I love you and little Christopher holds a very dear place in my heart. I will pray for that miracle. I will pray for Christopher's body to heal and recover on this earth. I'll ask God to cover you in His grace, for His grace is sufficient. And I will ask Him to hold Christopher close to His chest and breath a miracle of life into his tiny, frail body. All these I pray in His name. Paige, I know your hurt, your confusion, and your anger. If you ever want to talk to someone who's been there, you can call me anytime. My cell# is 336-624-9822. Hang in there! You're a great mom!!! Sending hugs from W-S, NC and kisses from Heaven... Shawn, Taylor, & ^^REESE^^ Coble
Email:ezekiel_prorok@hotmail.com Comments:I was so sorry to see today's update on Christopher's condition. In my heart, I know God will heal him. I left my office this afternoon to go to St. Patrick's Cathedral in Manhattan so that I could light a few candles and say a few prayers for Christopher's recovery. I am praying for Christopher every hour. Mike Baresich, NY NY
Email:tina@melroseroad.co.uk Comments:I am so sorry things are things have got worse. Please do not give up hope, Sophie had adnenovirus and a fungal infection in her lungs, it was the most horrible and scarriest time of my life but she fought and pulled through. Miracles happen every day. I have seen it happen and I am praying you will to. Love Tina,Padraic,Amy + Sophie p.s. Please e-mail if you need to, I am in London so I will respond a quickly as I can.
Email:amyn_finn@hotmail.com Comments: I just wanted to let you know that I am having everyone in my family and pretty much everyone I talk to pray for your little one. I don't feel like it is his time to go. God Bless you all! Amy Finn Louisville, Ky
Email: kris@mpssociety.org Comments: Praying praying praying! (((HUGS))) Kris Klenke
Email:Beccao@comcast.net Comments:We have been praying for you and Christopher daily., I know that everthing is very critical at this time. Bless all of you ..Becca Ott Salisbury Presbyterian
Email:daisy@vanopstal.com Comments:Paige, Joe and Christopher, Our hearts hurt for you. We pray daily for you and today I made sure to call all of my prayer groups to let them know Christopher's current status so we could all continue praying. We love you guys! If there's anything else we can do to do, please call us at home. Love, Daisy, Bill and Will
Email: Comments: Matthew 7:7-11: "Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you: for every one that asketh receiveth; and he that seeketh findeth; and to him that knocketh it shall be opened. Or what man is there of you, who, if his son shall ask him for a loaf, will give him a stone; or if he shall ask for a fish, will give him a serpent? If ye then, being evil, know how to give good gifts unto your children, how much more shall your Father who is in heaven give good things to them that ask him?"
Email:alisonj_knott@yahoo.com Comments: Christopher, I heard of your site on Sophie's, and her parents asked us to pray for you. I am sorry that you are so ill, please keep on fighting hard, you have the love and support of many, many people. Alison & family
Email:vt9@msn.com Comments:So sorry to hear the news. We are all praying for baby Christopher's kidneys to start working again. Keep the faith. All our love, Janet and Jason
Email:arhimes@msn.com Comments:Paige and Joe, I am so sorry that Christopher is so sick. Jeff and I are praying for him right now. He is in the hearts of so many people right now and so are you. Let us know if we can do anything else for you. Love, Anne
Email: Comments:Genesis 9:13 "I set my rainbow in the cloud,and it shall be for a sign of the covenant of life.It shall be,when I bring a cloud over the earth,that the rainbow will be seen in the clouds and I will remember my promise." Christopher Josephs life is very precious.He has created a fellowship amongst people across the country ,many of whom will never meet one another.We continue to pray for a miracle.All of our love and hope, Pete and Lori
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Email:ltjpost@cox.net Comments: Praying for little Christopher! Hurler kids are VERY strong! Keep the faith! Lisa Post
Email:arnoldklk@cox.net Comments:I know you all from CUMC and also am good friends with Pete and Laura Hesse and the Masse's. I've followed your daily updates since you started writing them but have never posted here--I'm not very computer literate and it seemed odd writing to someone I didn't really know. I felt compelled to write today and tell you just how much we (myself, my husband and my daughter Kaelyn) are praying for you. I will admit to a fair amount of anger at God for allowing Christopher to go through so much difficulty and for the two of you to have the gut wrenching experience of having to watch him go through all of this. I admire your courage and I appreciate your sharing the experiences through the daily updates. I have worked in a hospital setting and I understand how desparate you must be to get out of there and back to a normal home setting. I hope your desire to transfer to Fairfax and at least get closer to home will be answered. I am sending you a prayer that when things get overwhelming that you "Lift up your eyes unto the hills". Pick a favorite hill or mountain that you have stood on; close your eyes and imagine yourself there. Feel its beauty and peace and for that brief moment take yourself away from the pain that you are experiencing. It is a way that I have found to help me with the struggles in my own life and I share it with you in hopes that it will bring you some relief. Know that many, many people are praying for you and that you are loved and cared about in many, many ways. Kerry Arnold
Email:judithsween@aol.com Comments:Dear Paige and Joe, Sending all our love and prayers. Remember that Hurler Babies are strong and amazing...Love Mighty-Max's Granny
Email:otpera@verizon.net Comments:Christopher is in our prayers every day. We think about you and the strength that you share and truley believe that the strength of your love will be felt by Christopher as he makes his recovery! We are with you, Matt, Michelle, and Graceanne Dates
Email:chmbrman@aol.com Comments: My heart and prayers go out to all of you. As I do every night I will have a special prayer for Christopher and you tonite. love, Sally Dunn.
Email: Comments:Thinking of you and praying for Christopher. Love, Cara Haney
Email:jen@masonish.com Comments: I have been following Christopher's story for some time now. I can't go through the day without "checking on him". I am deeply saddened by how ill he is now. Please know that my thoughts and prayers are with you and Christopher and your family every day. I will hug my son (14 months) extra tight in honor of your strong, strong boy and family!! God Bless, Jen Mason
Email:jen@masonish.com Comments: I have been following Christopher's story for some time now. I can't go through the day without "checking on him". I am deeply saddened by how ill he is now. Please know that my thoughts and prayers are with you and Christopher and your family every day. I will hug my son (14 months) extra tight in honor of your strong, strong boy and family!! God Bless, Jen Mason
Email:AngelHaps@aol.com Comment: Dearest Paige and Joe, I just found your website yesterday and I am so very sorry to learn of the pain that you are all in. Please know that you are in my thoughts and in my prayers and will continue to be. I used to work in a NICU and can somewhat imagine the anguish you are experiencing with a desperately ill child. Hold fast to God and your friends. They will help you through this. Christopher is named for two strong saints and I'm sure he's a fighter. Know that you are loved. Louise
Email:Sarah.nelson@allina.com Comments: I have been following your site since christopher started his treatments (I am not sure how I found it). I just want you to know that you are in my thoughts and prayers all day everyday. Christopher is a very special little boy and I know that God has a huge plan for him. He is such a little fighter. Thank-you for sharing your story with so many people. He has touched my heart and made me a different person. Take care and I will be praying for all of you Sarah
Email: Comments: We are praying, seriously praying, for strength and healing for all three of you. Love, Jennifer, Greg, and Sarah Faucette
Email:nicole.mendoza@vastera.com Comments:I came in to work this morning and, as always, checked for your daily updates. I am terribly sorry to hear that Christopher's condition has gotten so critical. I continue to pray for your family every day, and ask God to heal little Christopher and his wonderful parents. Know that you are in my thoughts, and I am praying for a miracle for Christopher. Love, Niki (Lare) Mendoza
Email: Comments:still praying.... shawn
Email:arhimes@msn.com Comments:I am so glad Christopher continues to fight hard and that you can feel the support that is coming from so many of us out here. As I was out on the track today walking, I was praying for you and Christopher and I thought I wonder what you would think if you knew someone was exercising and praying for you at the same time and then it filled my heart to know that there are probably 1000's of peo
