Girl With Extremely Rare Juvenile Amyotrophic Lateral Sclerosis Keeps Positive Attitude

According to a story from, nine-year-old Taylor Futch’s smile has always been able to captivate those around her. Unfortunately, Taylor’s smile is often the extent of her ability to communicate these days. Her speech has become limited two just a couple of words at a time. This is because she was diagnosed with a very rare juvenile form of amyotrophic lateral sclerosis, a terminal disease which has steadily taken away her speech and mobility.

About Amyotrophic Lateral Sclerosis

Amyotrophic lateral sclerosis, otherwise known as Lou Gehrig’s disease, is a rare, degenerative disease that causes the death of nerve cells associated with the voluntary muscles. Little is known about the origins of amyotrophic lateral sclerosis, with no definitive cause in about 95 percent of cases. The remaining five percent appear to inherit the disease from their parents. The juvenile form of the disease is more likely to be the result of a familial mutation. Most patients with this type also life longer than in the classical form. Symptoms initially include loss of coordination, muscle weakness and atrophy, muscle stiffness and cramping, and trouble speaking, breathing, or swallowing. These symptoms worsen steadily over time; most patients die because of respiratory complications. Treatment is mostly symptomatic and the medication riluzole can prolong life. Life expectancy after diagnosis generally ranges from two to four years, but many patients can survive for substantially longer. To learn more about amyotrophic lateral sclerosis, click here.

Taylor’s Story

Taylor has always had some issues with her health, but her father Jesse could have never predicted that she would be one of only a small number of children with amyotrophic lateral sclerosis. Doctors originally diagnosed her with cerebral palsy when she began to have developmental delays.

She has always needed crutches and braces to walk, but Meredith Graham Lawver, her physical therapist, noticed that she didn’t move like other cerebral palsy patients. As she continued to decline, a genetic test finally revealed the truth.

Naturally, the news was devastating to Jesse and his fiance, Maddie Silver. Now, a multidisciplinary team is doing everything they can to maintain Taylor’s mobility, speech, ability to swallow, and muscle strength for as long as possible. 

If you would like to help donate to Taylor and her family, click here.

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