I wrote my Masters’ Thesis in bioethics on neonatal bioethics. While I didn’t write on neonatal euthanasia, I read plenty about it. Euthanasia is omnipresent in any intensive care litterature, especially neonatal intensive care. The great majority of theoretical case-studies supporting neonatal euthanasia and withdrawal of treatment overwhelmingly use two specific diseases to make their point. The first one is Tay-Sacks disease. The second one is Epidermolysis bullosa. I think these diseases are considered to make life so futile and painful as to not being worth living.
I love it when they are proven wrong.
See the life story of Alice Ervin, published in this morning’s Ottawa Citizen. It moved me to tears. There is no doubt that EB must have caused Alice great pain and suffering. But her worth and her dignity as a human being were not defined by it. I am glad to have met her, even briefly, through the pages of a newspaper.
by 
Just finished reading about ‘Baby Joseph’ and the work of simple people who see that life and people are to be cherished and then I’m presented with this story of Alice. Humbled again. Thanks for pointing out the story of Alice.