Noah's Rainbow

"And as Jesus passed by , he saw a man which was blind from his birth. And his disciples asked him saying, Master who did sin, this man, or his parents, that he was born blind? Jesus answered, neither hath this man sinned, nor his parents; but that the works of God should be made manifest in him." John 9 1-3




NOAH JAMES PRICHARD
Born on Monday, September 16, 2002 at 01:11 a.m. at Tripler Army Medical Center--Honolulu, Hawaii and died on Tuesday, October 7, 2003 at 12:05 a.m. at Duke University Medical Center--Durham, North Carolina

This web site is intended to keep family and friends informed of Noah’s progress. Noah was offically diagnosed with Krabbe’s disease on Friday, January 17, 2003, when he was 4 months old. This disease is genetic and is passed on by both parents. The illness caused Noah to be born without an enzyme that breaks down chemicals that form in the brain. Noah’s entire nervous system becomes damaged from the build up of these chemicals, which are toxic at elevated levels. The toxins destroy the protective coating of the nerves, called myelin, which is necessary for nerve function. The average life expectancy of infants afflicted with this disease is 13 months, but a handful of children have lived for a few years after diagnosis. The only way to treat this illness right now is with a stem cell transplant, using either bone marrow or umbilical cord blood. Noah’s blood making capability will be destroyed by chemotherapy, and the new donor stem cells introduced, which possess the enzyme Noah is missing. Once these new cells take hold they must cross the blood brain barrier and metabolize the toxins in his brain in order to stop the progression of his disease. There is no way of knowing what he has lost or will gain back developmentally, because every child reacts differently after treatment. Noah was transplanted on Wednesday, February 19, 2003 with donated stem cells from umbilical cord blood. After about 40 days Noah was tested to see how well his donor cells were engrafting into his bone marrow, and he was found to be at 46%. A few weeks later he was tested again and had dropped considerably, down to 3% donor cells and this showed that he was losing his engraftment. He was given a small boost of donor stem cells that were left over from his original donor unit on April 22, 2003. He was retested after 30 days and was at 10% donor cells. However, Noah suffered complications from both his disease and the harsh treatments of transplant, which his body could not endure. Our beautiful baby Noah passed away, flying free to the arms of Jesus with his perfect wings and new perfect body on Tuesday, October 7, 2003 at 12:05 a.m. on the Bone Marrow Transplant Unit at Duke University Medical Center. We appreciate all of the faithful supporters that have prayed and encouraged us during this tough journey. We are forever grateful. God Bless.

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NOAH, OUR SWEET BABY BOY, YOU ARE LOVED AND MISSED SO VERY, VERY MUCH! luv, mommy & daddy

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Noah has a SMILES QUILT that has been made for him by the quilting angels. It can be viewed by visiting the smiles quilt web page at www.smilequilt.com Enter into the Index, and look under page 5 of the Name Index and you will find "NOAH P." in the right hand column. Click on his name and you can view his smiles quilt.

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Noah also has another virtual quilt made for him at the "QUILTS OF LOVE" web site. It can be viewed by going to the following web address:

quiltsoflove.com/quilt/noahP/noahP.html

NOAH SAYS:
I'm free.

Journal

Thursday, December 27, 2007 5:53 PM CST

Merry Christmas everyone! We had a blessed Christmas. Our tree was speckled with angel ornaments collected since our first family Christmas with Noah in 2002. Amazing to think that was 5 years ago...he was so amazed by the lights on the tree...his eyes would get really large with wonder when I would hold him and stand next to it all lit up. Greg and I were reminiscing the other day about our only Christmas spent with him...giving him a candy cane to try...he licked the heck out of it. It was so cute...red sticky candy cane around his mouth. What a cutie pie he was. It was less than a month later that he was diagnosed and we were on our way to Duke with complete unaware about what the future held in store. We owe so much to that little boy...he blessed our lives beyond comprehension. That book idea that we were toying around with several years ago after he died, well...we are working on it finally...but I wanted some help from some of you. (Thieving an idea from Michelle) I would like to ask you to tell us how Noah impacted and touched your life...I think this would add an interesting chapter to the book...and it is always a parents fear that their child will be forgotten...I don't want him to be forgotten...he gave so much, being as small as he was, and it cannot be in vain, which is why the book is so important to us. To honor his sacrifice, his struggle, his life...by possibly helping others in some way. Maybe someone who is contemplating transplant, dealing with the threat of losing their child to a terminal illness, a family who has just learned of Krabbe because their child has just been read a death sentence and they have no idea what they are up against. We were clueless and wanted to know as much as we possibly could about anything...everything...in the first minutes of being told Noah had Krabbe. The desparation of not knowing our enemy...fear of the unknown. It may not save any lives...Dr. K is in that specialty and great at what she does...but maybe it will help in some way. So please, let us know...via guestbook or email...we would like to know.

I ask that you will continue to keep Howard, Michelle and Mackenzie in your prayers...and all of the Duke kids and families...all of the Hunter's Hope/Leukodystrophy families in your prayers...heck...just pray for everyone, because we ALL need to be prayed for. Our prayers to you and yours for a New Year blessed with peace, joy, and love. I challenge you to set a New Year's resolution to be a better person than you were last year...help more people in need...doing more good deeds...smile more...laugh more...love more! God bless!

The Prichard Family

Read Journal History

Hospital Information:

Patient Room: HOME ADDRESS

The Prichard Family
105 South Lexington Court
Ellerslie GA 31807

Links:

E-mail Author: noahprichard@yahoo.com

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