Will Byers, 10, is a Lemm Elementary student at Klein ISD. In 2015, he was diagnosed with Sanfilippo syndrome. The disease has been compared to Alzheimer's in children.
Babies are born seemingly healthy, but a genetic defect inhibits the breakdown of cellular waste. Over time, children with this disease have conditions that worsen. Eventually they lose their motor skills, the ability to talk, walk and feed themselves. Life expectancy is in the mid-teens.
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After the diagnosis, Will's parents decided to focus on what was most important, spending time together as a family to make memories.
Will loves to run. His family took that to heart and created "Will Power," a movement to raise funding for research and awareness of this rare disease. They take part in many community events.
Every year, they work with The Woodlands Marathon charity challenge. They've raised more than $200,000 over the past six years.
Also, through The Woodlands Junior's run club program, Will can run laps, and track his mileage just like other kids.
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The Byers family says they get through this painful diagnosis by working to inform other families and by keeping it simple at home. Their goal is to make sure that in everything they do, their son feels happy and knows he's loved.
Learn more about SanFilippo Syndrome
Learn more about Will Power
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