Kaylee suffers from Joubert's Syndrome, which causes a malformation of part of the brain, which control balance and coordination. Because of the syndrome, Kaylee suffers from apnea, a common sleep disorder among adults. But, Stephen Drake of Not Dead Yet, points out, "Literally, thousands of people with apnea in the US and Canada, use various devices to assist their breathing when sleeping. Here, where I ask one of my rude questions: Is the word apnea, being avoided because people don't associate it with dying, but recognize the term as covering a variety of disorders, and treatable conditions."
Neither the National Institute of Neurological Disorder and Strokes, nor the Joubert's Syndrome Foundation describes Joubert's Syndrome as a terminal condition. Moreover, the National Institute of Health (NIH) said, "Although some infants have died of apnea, episodic apnea, generally improves with age, and may completely disappear."
Jason Wallace, the baby's father, told the media, that Kaylee is a vibrant baby, "She moves, she wakes up, she opens her eyes, when she goes to sleep, the machine does the rest." Maybe not true. Kaylee was taken off the respirator, in order to donate her heart, but she surprised everyone by continuing to breathe on her own. This caused her to be removed from the organ donor protocol for the time being.
Alex Schadenberg, Director of the Ontario based Euthanasia Prevention Coalition, stated: "The reality may be a little different from what the news reports are telling us. Joubert's Syndrome is a rare condition, that is not typically terminal. The question of organ donation of vital organs is a very serious question. To remove a heart from a person, after 5 minutes of cardiac death, is not the assurance that the person whose heart was removed, was actually dead. More to come.
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