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Dying Patients With Rare Diseases Struggle to Get Experimental Therapies

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themighty.com

By Christina Bennett  At 15, Autumn Fuernisen is dying. She was diagnosed at age 11 with a rare degenerative brain disorder that has no known cure or way to slow it down: juvenile-onset Huntington’s disease. “There’s lots of things that she used to be able to do just fine,” said her mom, Londen Tabor, who lives with her daughter in Gillette, Wyoming.

Autumn’s speech has become slurred and her cognitive skills slower. She needs help with many tasks, such as writing, showering and dressing, and while she can walk, her balance is off.

Autumn has been turned down for clinical trials because she is too young. “It is so frustrating to me,” Tabor said. “I would sell my soul to try to get any type [of treatment] to help my daughter.” For patients

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