Jack Spring's Medical Expense Fund
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Our son John Paul Spring II, "Jack" was born on May 6, 2016. At the time of his birth we were not aware of his metabolic disorder. Jack was officially diagnosed in the begining of June with Orinthine Transcarbamylase Disorder (OTC). OTC is a rare metabolic disorder that affects 1 in 80,000 people. OTC is a urea cycle disorder in which an enzyme that properly breaks down proteins in missing, resulting in the build up ammonia to toxic levels. This disorder is controlled with a low protein diet and ammonia scavenger medicine. A liver transplant is currently the only "cure" for this disorder.
Jack was in the NICU at Albany Medical Center due to meconium aspiration. Little did we know this would end up saving his life. On his fourth night in the NICU, Jack experienced a seizure and the doctors began to monitor him closely and had an EEG scan done. The next morning (5/11) his state screen came back showing a problem. His ammonia level was drawn and Jack's levels were at 2000! A normal level is around 50 and toxic levels start near 300. Jack needed emergency hemodialysis. This procedure could not be done at AMC because they did not have a catheter small enough. Jack was air lifted to Boston Children's Hospital that afternoon and immediately started dialysis to lower his levels.
Jack spent 16 days at Boston Children's hospital. His entire stay was focused on getting his ammonia levels under control. While in Boston, Jack had an MRI. His scan showed he had a significant neurological hit witj his entire brain being effected. While Jack has done much better than what the neurologists pictured for him so far. We will not know the extent of damage the ammonia had on Jack until he develops more. Jack spent a total of 46 days in the NICU between Albany and Boston (5/6-6/20).
The money raised will be used for any and all of Jack's medical expenses now and in the future. Jack is only a couple of months old and has endured more then most would in their entire life. He still has a long journey ahead of him and our goal is to give Jack as normal a childhood as possible despite his disorder and any adverse affects from the ammonia.
Jack was in the NICU at Albany Medical Center due to meconium aspiration. Little did we know this would end up saving his life. On his fourth night in the NICU, Jack experienced a seizure and the doctors began to monitor him closely and had an EEG scan done. The next morning (5/11) his state screen came back showing a problem. His ammonia level was drawn and Jack's levels were at 2000! A normal level is around 50 and toxic levels start near 300. Jack needed emergency hemodialysis. This procedure could not be done at AMC because they did not have a catheter small enough. Jack was air lifted to Boston Children's Hospital that afternoon and immediately started dialysis to lower his levels.
Jack spent 16 days at Boston Children's hospital. His entire stay was focused on getting his ammonia levels under control. While in Boston, Jack had an MRI. His scan showed he had a significant neurological hit witj his entire brain being effected. While Jack has done much better than what the neurologists pictured for him so far. We will not know the extent of damage the ammonia had on Jack until he develops more. Jack spent a total of 46 days in the NICU between Albany and Boston (5/6-6/20).
The money raised will be used for any and all of Jack's medical expenses now and in the future. Jack is only a couple of months old and has endured more then most would in their entire life. He still has a long journey ahead of him and our goal is to give Jack as normal a childhood as possible despite his disorder and any adverse affects from the ammonia.
Organizer
Meghan Elizabeth
Organizer
Clifton Park, NY
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