McKayla as well she is 13 and Transplanted January 5,2004 and has never returned to the hospital she only spent 12 days in and I spent 7.
I was asked to go and speak at a conference in Vancouver, Canada.I was almost ready to explode by the end of the first day of the conference because I did not get to speak until the next day.The Doctors were saying the same things your trading one medical problem for another. When it was my turn to get up and tell my story,I mentioned that one of them should take a Urea cycle kid home for a week and then come back and tell me if this was fair to ask anyone to live like that for years,its not, its cruel to the whole family.The day these kids are born you become a nurse,a chemist,a dietician and a number of other professions that you never trained for. I was only supposed to speak for 20 minutes and I ended up being up there for 2 hours,I hope I made a difference in the professionals opinions,They were from all over North America.I do have to say though that McKaylas metabolic docs were amazing, and thats who asked me to speak at the conference,they were always there for us and felt many of the pains we felt.
All the kids in Edmonton have now been transplanted well there were only 4 but that makes my heart soar.McKayla was a non-verbal 6 year old who had seizures,high ammonias, ataxia.Her hair fell out every couple of months her balance was awful she was in perpetual motion always,she never slept. Since transplant,McKayla's seizures stopped,she never stops talking ha ha ever she is talking right now as I am typing.Her hair is beautiful and long and thick.Her balance is great and I have a funny ,beautiful daughter.I look back at our life with the Urea cycle disorder and all I can say is hell on earth.As your going through it you don't realise how awful it is until its over.Life is beautiful, McKayla is thriving although she has delays(big deal compared to the alternative).
My daughter Katy is the exception to the rule on transplantation. She is 14 and 1/2 years post liver transplant and has never had a rejection episode nor has she ever been in the hospital since she... more
Life After Transplant Jodi Phelan,Fri Oct 29 9:42pm
I love reading these stories about Katy and McKayla. I know Justin has had an infinitely better life than the trajectory he was on before his transplant. Before TRUE Kids existed - the Ping and... more