Last night, one of Joshua's nurses told me she'd seen on the news a very disturbing story of a baby named Kaylee Wallace.
photo courtesy Global TV
This 2 month old baby who lives in Canada was on the news because her parents, Jason Wallace and Crystal Vitelli want to donate Kaylee's heart to another sick child. Watch the news story below:
What is so disturbing to us is that in the story, doctors called baby Kaylee terminal. But in the stories I've read, it was reported that Baby Kaylee just cannot breathe on her own when she sleeps. That is the same problem children with CCHS and even some children with ROHHAD have. Baby Kaylee's medical condition is called Joubert Syndrome.
Joshua's nurse is convinced Baby Kaylee is a viable child who can live a good long life if she is given the chance to be ventilated properly when she sleeps. But she is afraid the parents of this sweet baby girl do not have all the facts they need to make that decision.
I pray that if Kaylee can live a good life just by being on a ventilator when she sleeps - like Josh does right now - that somehow the Lord will intervene and lead her parents to the information they need before it is too late for Kaylee.
Here is a link for more information about Joubert Syndrome.
Here is a link to a website for the CCHS Family Foundation.
What do you think?