Why We Walk - Jack's Story

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When you walk in the Donate LIFE Walk on Saturday, you are walking to make sure more children like Jack can grow up.

Saturday's Walk - which begins at 8 a.m. in Fremont - will raise money for programs to educate the public about donation through the California Transplant Donor Network while honoring families who agree to donate loved ones' organs and tissues.

Team Lucile Packard Children's Hospital is being organized by Jennifer Johnson, a volunteer for the California Transplant Donor Network and Jack's mother.

Jack, now three and a half years old, came into the world with a rare genetic disorder that made him unable to process protein normally.  As a result, his tiny body became overwhelmed with ammonia - a chemical that normally would have been eliminated by the liver.

He had a 50/50 chance of making it through that first day in the NICU at LPCH.

Doctors worked to eliminate the ammonia from his body first through dialysis and then later managed ongoing ammonia levels through medication and a protein restricted diet.  For three months he was in the NICU and closely monitored being fed intravenously or by a nasal-gastric tube as his ammonia levels had ups and downs.

Jennifer says they couple almost lived at the hospital.

December was marked by being in and out of the hospital because of ammonia problems, until Christmas Day, when the family went home for what turned out to be nearly a month at home, with daily trips to LPCH to check ammonia levels. "Jack's transplant surgery came at 2 a.m. on January 25."

After 10 days, he was allowed to go home.  Imagine Jennifer's surprise when told, after being so consumed with monitoring ammonia levels in her child, that ammonia was no longer a concern.

"I kept asking after the transplant to see the (ammonia) numbers.  Finally the geneticist told me, 'We fixed that problem.'  He was right; the numbers were normal. But now I had a child who, because of a transplant, was living with his immune system suppressed."

Jennifer and her husband focused on protecting their child from anything that could get him sick- and because of his suppressed immune system - they were afraid of almost anything getting too closer to their son.

"Basically, for a while, the three of us were at home without any contact with anyone."

Transplant staff finally convinced them to begin to "let him out of the bubble" and let him have more normal experiences.

Because of the problems he had in his first few months, Jack is still playing catch up on development.  "He began walking a three.  He's still not able to speak.  But he is surprising us with all that he can do. He is getting developmental therapy and is a surprising, delightful little boy."

 

To participate,  register by Sept. 7 at   http://www.active.com/running/fremont-ca/ctdn-donate-life-walk-2011