A 19-year-old woman with a rare disease has died during a legal fight to circumvent a ruling that she was not competent to make decisions about her care, despite her desire to go abroad for experimental treatment.
The woman, named only as “ST” for legal reasons, died from cardiac arrest late on September 12. She had been dying from a progressively degenerative mitochondrial disorder but had hoped to travel to Canada to take part in medical trials for nucleotide therapy to help her survive.
“I want to die trying to live,” the woman told a psychiatrist evaluating her. “We have to try everything.”
