Kaylee Wallace
Kaylee Wallace is a 2-month-old who deserves a chance to live. She has Joubert Syndrome which causes severe apnea, meaning she requires a ventilator while she sleeps to keep breathing. Joubert syndrome can also have other neuromuscular complications, but it's too early to tell how Kaylee will be effected long term. Many children with Joubert Syndrome grow out of their apnea.
But that is not how it is being reported by the media. I first heard about Kaylee's story from Stephen Drake of Not Dead Yet, who has a reasonable explanation of what is going on, in the hospital and in the media. He is right though. The coverage leaves more questions than it answers.
I found this article, which portrays a more accurate picture of Joubert Syndrome, according to the clinical definition. It interviews doctors familiar with the disability, and parents who have a child who lives with it. More importantly, it interviews Kaylee's father who says:
"As parents we've decided that what we'll do is take it by the moment," Wallace said after meeting with doctors Wednesday.
"We're prepared if she's going to go home disabled in any way shape or form we would be happy with that outcome."
He wants her to live if she can, even if that means she has a disability, and if she can't live, he wants her to be able to donate her heart so another child can live. I don't see anything wrong with that. I just wish I was convinced that he had all the information available about her ability to live. The experts and parents quoted in the second article haven't actually met Kaylee or spoken with her family.
My understanding is that now that Kaylee is no longer a organ donor candidate, and she survived the night on her own, she is going home (again.) I worry though, what will happen to her when the media blitz dies down and she has another episode of apnea. Will they let this little fighter die? Or will they let her, like millions of Americans do every night, use a CPAP machine to help her breathe until she wakes up again.
Her family wants her to live. She's already proven, by staying awake all night the night she was supposed to die and give her heart to another child, that she wants to live. Will they kill her anyway in the name of "letting her die?" I hope not, and I wish I could be more sure.
But that is not how it is being reported by the media. I first heard about Kaylee's story from Stephen Drake of Not Dead Yet, who has a reasonable explanation of what is going on, in the hospital and in the media. He is right though. The coverage leaves more questions than it answers.
I found this article, which portrays a more accurate picture of Joubert Syndrome, according to the clinical definition. It interviews doctors familiar with the disability, and parents who have a child who lives with it. More importantly, it interviews Kaylee's father who says:
"As parents we've decided that what we'll do is take it by the moment," Wallace said after meeting with doctors Wednesday.
"We're prepared if she's going to go home disabled in any way shape or form we would be happy with that outcome."
He wants her to live if she can, even if that means she has a disability, and if she can't live, he wants her to be able to donate her heart so another child can live. I don't see anything wrong with that. I just wish I was convinced that he had all the information available about her ability to live. The experts and parents quoted in the second article haven't actually met Kaylee or spoken with her family.
My understanding is that now that Kaylee is no longer a organ donor candidate, and she survived the night on her own, she is going home (again.) I worry though, what will happen to her when the media blitz dies down and she has another episode of apnea. Will they let this little fighter die? Or will they let her, like millions of Americans do every night, use a CPAP machine to help her breathe until she wakes up again.
Her family wants her to live. She's already proven, by staying awake all night the night she was supposed to die and give her heart to another child, that she wants to live. Will they kill her anyway in the name of "letting her die?" I hope not, and I wish I could be more sure.