Bioethics News

‘I Don’t Like Dying’: 5-Year-Old Who Chose to Forgo Treatment, Sparking Debate, Has Died

June 21, 2016

(Washington Post) – Julianna, of Washougal, Wash., was diagnosed with Charcot-Marie-Tooth Disease, which is one of the world’s most common inherited neurological disorders, according to the National Institutes of Health. It’s a progressive disease that damages the nerves affecting certain muscles. In most cases, it’s relegated to the arm and leg muscles, sometimes so mildly doctors don’t even find it upon examination. But there are many mutations of CMT, and symptoms range in severity. Julianna’s case was one of the most severe.

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