UK court rules teen with rare disorder incapable of making decisions about care despite begging to live

A UK court has ruled a 19-year-old critically ill female patient with a rare disorder cannot make her own decisions about continuing her medical care, as her family battles her doctors’ desire to stop treatment and pursue end-of-life care.

The teen, whose identity has been anonymized as “ST” by the court, has a rare genetic mitochondrial disease that is progressively degenerative, according to court documents. Her condition is similar to that of Charlie Gard, the infant whose story drew global headlines in 2017. Charlie’s parents lost a bid to bring him to the U.S. for an experimental treatment for his critical condition and he died after the hospital withdrew life-saving care after a months-long high profile legal battle.

Despite previously being a student studying for her A-levels (short for advanced levels), the 19-year-old girl has spent the past year in the ICU, dependent on a ventilator and a feeding tube. She requires regular dialysis due to chronic kidney damage from her disease. “ST” is currently fighting the hospital to be allowed to travel to Canada for an experimental treatment to treat her disease.  (Click to continue reading)

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UK court rules teen with rare disorder incapable of making decisions about care despite begging to live