Community raises money for Maddie Richards' clinical trial

CLARKSBURG, W.Va. (WDTV)-- "We can help not just Maddie but all the other kids with sanfilippo..."

Several people from around the area gathered to support Maddie Richards, a 10-year-old who was diagnosed with sanfilippo syndrome in 2017. Brittney Richards, Maddies mother, says that the disease is rare and is often misdiagnosed.

"Sanfilippo affects 1 in 70,000 children," said Richards. "It's a very rare, genetic disorder that is usually misdiagnosed at a young age as autism because it mimics and then as it goes on she loses skills and abilities."

Despite the diagnosis, Maddie is fighting for the chance to go through a clinical trial that could potentially change her life. The cost is expensive, so the community came together to "fight for Maddie."

"Right now the cost of that clinical trial is $100,000," said Kortney Keller. "Today we are raising money to put towards that trial."

The event had several activities including corn hole, auctions, food trucks, a dunk tank and raffles all to help Maddie and her fight. Richards says that it's been a long journey but she is blessed for the people that have supported her daughter.

"We have so much community support and we are so blessed to have that," said Richards. "It just makes the things easier to deal with whenever you have a lot of people rallying behind you."

Richards says that even though the trial does not guarantee anything, she hopes that it'll help her daughter live a better life.

"This clinical trial is something that is experimental but we're hoping that it'll be something good that will help her live a happier, healthier life."