Editorials

Cure for rare neurological disorder must start with hope

Madison County girl with rare disease has big dreams for the future

Hailey Knecht of Pocahontas was predicted not to live past 6-years-old when she was diagnosed with Alexander's disease. She celebrated her 16th birthday this year and is helping researches to find a cure for her ultra-rare condition.
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Hailey Knecht of Pocahontas was predicted not to live past 6-years-old when she was diagnosed with Alexander's disease. She celebrated her 16th birthday this year and is helping researches to find a cure for her ultra-rare condition.

Hailey Knecht is a tough teen from rural Pocahontas whose doctor never thought she’d become a teen. She has Alexander disease, a neurological disorder so rare that only about 500 cases in nearly 70 years have been reported worldwide.

She was expected to die by age 6. She is now 16.

“If she wasn’t as tough as she is, she would not be here,” said her mother, Dawn Knecht. “She has a determination and a will. She might be tiny, but she is fierce.”

Fierce, and a source of hope.

She made it 10 years past when they thought she would, so there is hope for an adult life as a baker with her own restaurant. She is helping researchers, so there is hope for others with the disorder.

Cures come from trying, but first you need hope.

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