A local child struggling with a rare disease hopes for a life-changing moment in a contest to win a wheelchair accessible van.
Five-year-old Shae Grisham struggles with pompe disease, a rare neuromuscular disorder that Shae’s mother, April, who works at Coach’s in Lebanon, said falls under the umbrella of muscular dystrophy.
“It affects every muscle in her body, even her heart,” April Grisham said.
Those who are diagnosed with the disease lack an enzyme that prevents the breakdown of sugar in muscles and causes progressive muscle weakness. Shae is confined to a wheelchair and cannot walk, said April Grisham. Shae receives enzyme replacement therapy every two weeks at Vanderbilt University Medical Center to stop the progression of the disease, but is still unable to do many of the things children her age can.
“She was diagnosed at 14 months old,” said April Grisham. “She was the first ever diagnosed at Vanderbilt.”
As part of Medical Mobility Awareness Month, a contest is ongoing in which the four grand prize winners will receive a wheelchair-accessible van.
“She has a Permobil wheelchair, and she gets to utilize it inside the house, but we don’t have a way to get it to the grocery store or any place like that. It would improve her life greatly if she could go places.”
Shae also has an older brother, Tyler, 8, who April Grisham said asks her on numerous occasions why his sister can’t do many of the things he does.
“He asks me all the time, ‘why can’t Shae do this?’ He would be able to spend more time with her outdoors if we had the way to get her and her wheelchair out of the house.”
Currently, if the family wishes to go out, Shae and all of her necessities have to be carried, which makes things difficult. April Grisham said “in the contest in the rules it says [the vans] are worth $50,000. There’s no way we would ever be able to afford one.”
Anyone interested in helping the Grisham family can visit mobilityawarenessmonth.com/entrant/april-grisham-lebanon-tn/ to cast a vote for Shae. April Grisham said anyone who wishes can vote once a day.
“It’s not based on votes, but in order to get into the finals, you have to have a lot of votes. Then a panel of judges decides who the four winners are.”