Fan uses Redskins to raise awareness for daughter’s rare neurological disorder

Fan uses Redskins to raise awareness for rare condition

RICHMOND, Va. (WWBT) - Ashley Stokes has been a Redskins fan her entire life.

She’s been attending training camp and games since she was little, and now that she has a daughter of her own, the Richmond resident has been taking her to camp in their own backyard. However, she’s using the opportunity for more than just a chance to watch football.

While the Redskins’ players battle to make the 53-man roster, Ashley’s 2-year-old daughter, Lilly, is on a 53-person list of a different nature. She’s one of just 53 people worldwide with a condition called Champ1.

“Lilly is the youngest Champ1,” Ashley said during training camp Wednesday. “It is a neurological disorder. They lack protein in the brain, so it can cause intellectual delays, developmental delays, speech issues, vision, hearing, and some kids even have seizures.”

Lilly was diagnosed with Champ1 through a genetic test at VCU, and came as a shock to her family as they searched for much-needed answers.

“We just kind of broke down and the first thing we did was Google it and we found the foundation,” Ashley said. “We called the foundation and he told us that they raise champions.”

Lilly has had eye surgery, has possible hearing issues and developmental delays. She has yet to walk and can only say two words.

“She’s never crawled yet, doesn’t really talk much, so we really don’t know what’s ahead,” Lilly’s mother added. “Kind of an unknown road.”

Ashley has turned to her favorite football team for some help. She’s asked Redskins’ players to take pictures holding a sign to raise Champ1 awareness. Some have even recorded videos and donated signed memorabilia to a silent auction.

“We’ve got to use our platform as athletes,” said Redskins’ linebacker Ryan Kerrigan. “It’s a big one that we’re fortunate to have, and only have it for a short period of time in life, so you’ve got to utilize it to the best of your ability and try to impact others in a positive way.”

“I’ve not had one player tell me ‘no,’” added Ashley appreciatively. “They’re just all open and all for it, so anything they can do, it’s been great.”

There is currently no cure for Champ1, but Ashley is hopeful there will be therapeutic breakthroughs within five years. In the meantime, she and her family are moving forward just the way her beloved Redskins do- one step at a time. Ashley is approaching the situation with a positive mindset.

“It’s definitely been challenging, but we just keep going to therapy, doing speech therapy, try to work with her and get her out as much as we can and hope for the best.”

For more information on Champ1 and to learn how you can help, visit https://champ1foundation.org/?fbclid=IwAR3oFGm0Jq7GKG_1vo-XwL0ilTzbzRmVXb6oc7VTvxGcZWtIGBLC5fZo1kY.

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