Doing it for Cooper



Cooper was born on the 8th may 2013 as a healthy little boy. On day 2 of his life I had noticed he wasn't normal he wouldn't open his eyes and kept spewing the nurses kept saying it was normal until he had a temperture and his heart was racing. Within an hour cooper was admitted to the NICU where he slipped into a coma. Not knowing what was going on we were told to say our goodbyes the doctors had no idea what was wrong, one of the NICU specialists decided to check his ammonia levels (ammonia is a very dangerous poision which puts you into a coma, causes severve brain damage and death). A normal ammonia level for a newborn is less than 5 coopers came back at 1380. From there he was transfered immediately via NETS to westmead childrens PICU. There we were told that his ammonia was now 1800 and they said to say goodbye again as they havent seen someone survive ammonia levels that high and if he did he would be a 'vegetable'. He was than diagnosed with a urea cycle disorder called CPS1. With this disorder he is protein restricted many things causes his ammonia to rise like spewing, diarrhea, getting sick, eating protein etc.
He is on several medications and a special diet. He is the most severe case they have had in Australia. The only way to treat this is with a liver transplant, they have never done this in australia alothough. Without a transplant he wont have a very long life. We are still awaiting approval of transplant in Australia which hopefully wont be much longer of a wait. Cooper has defied the odds so far but he can have a hyperammonia any day. https://www.facebook.com/pages/Doing-it-for-Cooper/360727104074627?focus_composer=true&ref_type=bookmarkhttps://www.facebook.com/pages/Doing-it-for-Cooper/360727104074627?focus_composer=true&ref_type=bookmark
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Organizer

Deb Catley Saywell 
Organizer
Regentville NSW
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