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A letter to JHC about NoahJuly 15, 2003 | ||||
Dear JHC,| My son, Noah, has been through an awful lot in his short lifetime of only 5 years. From birth, Noah has endured a total of 46 surgeries. He has many health problems, so far Noah has been diagnosed with; Arnold-Chiari: Malformation, Hyrocepulis, Vather Syndrom, Asmtha, Bearne-Stevenson Syndrom, Server Allergies, Sleep Apnea, GI problems, Tight Heel Cords, and the older he gets, doctors expect to find even more health disorders.
| At the end of July 2003, Noah is scheduled for his 47th surgery. This surgery is an attempt to ‘fuse’ Noah’s skull to his spine in order to reduce brain settling. This should help support his head and provide some relief from agonizing headaches. To me, there is only one word to describe Noah, that would be, “ANGEL”! Throughout his short life, Noah has been a brave little Angel, a gift from God and a blessing to his family. Even with all of his health problems, many hospitals stays and multiple surgeries, Noah remains a happy child. Noah can’t speak many words, but he loves the chance to show off in front of people and does his best to make friends with everyone he meets. His doctors have told me many times to have faith, pray and enjoy each day with Noah as if it were his last. As his mother, I want him to enjoy life to the fullest. As his family, we try to make each day as happy and as fulfilling as possible for Noah. In closing allow me to express some of my feelings about Jesica’s Hope Chest, Inc. (a foundation for critically ill children). This, “one of a kind” foundation helps support families such as ours in our most critical time of need. Jesica’s Hope Chest is different from other ‘child help’ foundations, in part, because it helps critically ill children and their families on so many different levels. Noah is very proud to be a ‘JHC’ kid, and we, as Noah’s family are very fortunate to have JHC for financial and emotional support. Thank you JHC! Sincerely, | Susan, | Noah’s Mom | |
Monday, September 01, 2003 |
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Hello Everyone, My son Noah Johnson (a JHC Kid) just had surgery on August 25th at North Shore Hospital in New York. He had the surgery for C-4 Cranial Fusion which means they placed two steel rods on each side of his skull, held in place by screws and wires. This is going to support Noah's brain and prevent cranial settling until he can grow. The steel rods are expandable so that in the future they can be expanded as he grows. Then later he will need a bone fusion operation. But, it is not time for that right now. Noah's doctors say the surgery that was done has a success rate of 50%. I am holding onto that 50% with all my heart. His recovery is going to be a challenge and a very long process. He will need to learn to walk again and to balance himself. Noah must also be taught that he can not turn his head anymore nor look up and down. But I know that he can do this. My son has already undergone 47 surgeries and to this day he still remains a happy child, with a positive attitude. Jesica Hope Chest is an incurable organization. I know that without their emotional and financial support allot for Noah would not be possible. I want to thank each and everyone of you for your support and donations to Noah and to JHC. So many kids are critically ill and with the support of this organization things can be done for them. May God Bless the Kids and all of YOU!!!
Thanks, |
These pictures are from Noah's stay in the hospital. His mom, dad and brother were there to support him. JHC makes it possible for families like Noah's to be able to take the time off from work that they need to be there when their child needs them most.Please help us to help Noah and other children have the support they need when the time comes.
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