Less than two minutes is all it takes to potentially give a 5-year-old girl who suffers from a rare disease and her family a life-changing event in their lives.
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,” April Grisham said.
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.
Shae’s mother said a lot of votes are needed in order to get into the finals, where a panel of judges will decide the four winners.
Let’s all get behind this effort and see if Wilson Countians can make a difference for this family. It doesn’t cost anything, but doing nothing could cost young Shae and the Grisham family plenty.