The force is strong with boy’s wheelchair Halloween costume
MDA, Magic Wheelchair team up on Star Wars-inspired outfit for child with SMA
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An 11-year-old boy named Dash (bottom center) received a custom wheelchair costume at an event earlier this month. (Photo courtesy of the Muscular Dystrophy Association)
- This Halloween, a boy with SMA named Dash will be trick-or-treating in a wheelchair costume inspired by Star Wars.
- The custom outfit is the result of a sweepstakes run by the MDA and Magic Wheelchair.
- Dash also participated in the clinical trial that formed the basis for FDA approval of Isembyld.
This Halloween, an 11-year-old living with spinal muscular atrophy (SMA) named Dash will be trick-or-treating in a costume fit for a galaxy far, far away.
Last year, Dash Stanton was selected as the winner of a Halloween sweepstakes on Instagram that was run by the Muscular Dystrophy Association (MDA) — an advocacy group dedicated to improving life for people with SMA and other neuromuscular diseases — in partnership with Magic Wheelchair, a nonprofit that “builds epic wheelchair costumes at no cost to families.”
As the winner of the sweepstakes, Dash received own custom wheelchair costume. Since he’d been bingeing the streaming series The Mandalorian, he asked for a Star Wars-themed chair, which he received earlier this month during an event at the Minnesota Fire Fighters Museum.
“My initial reaction was just like, this is way past what I thought it would be. This is so cool,” Dash said at the event.
“It’s so cool to see my regular wheelchair be transformed into this amazing Starfighter … it’s one of my favorite ships in the Star Wars Galaxy,” he said, adding that “this experience means a lot to me because they took my idea and they made this absolutely amazing wheelchair costume for me.”
A deep connection with MDA
Dash gets his first look at his custom Star Wars-inspired wheelchair costume. (Photo courtesy of the MDA)
Dash, who lives in a suburb of Minneapolis, has a long history of connection with the MDA. He has attended the association’s summer camp and receives medical treatment at the MDA Care Center at Gillette Children’s Hospital.
“MDA means a whole lot to me and my family because they’ve been with us ever since I got diagnosed and have been trying to fight for the good … treatments for me and other kids with SMA,” Dash said.
The event where Dash received his costume was a collaboration between the MDA, Magic Wheelchair, and Minneapolis Fire Fighters Local 82 — a local affiliate of the International Association of Fire Fighters (IAFF), a union that represents thousands of firefighters across the U.S. and Canada.
MDA means a whole lot to me and my family because they’ve been with us ever since I got diagnosed and have been trying to fight for the good … treatments for me and other kids with SMA.
Since 1954, IAFF has raised more than $720 million through its Fill the Boot Fundraiser. The presentation of Dash’s costume kicked off a series of local events for this year’s fundraiser.
“It feels so good to have the Minnesota firefighters not only standing for me, but also for all of the other kids with muscular dystrophy out there to help with Fill the Boot and all those other fundraising events that they do,” Dash said.
Playing a part in drug’s approval
Dash reacts to his costume at the event. (Photo courtesy of the MDA)
Dash’s receipt of the wheelchair came only weeks after the U.S. Food and Drug Administration (FDA) approved Isembyld (apitegromab-mstn), a first-of-its-kind add-on treatment designed to improve muscle strength in people with SMA who are already receiving other medications to slow disease progression.
For Dash’s family, this milestone carried personal weight, because Dash participated in the clinical trial that formed the basis for FDA approval of Isembyld. In a video put out by the MDA earlier this year, he and his mother discussed how the therapy has improved his endurance and energy.
“Dash was a part of the Isembyld trial, and I think the fact that it’s become approved means a lot because that’s the end goal. I mean, we signed up for the trial to help move the drug pipeline and help other people receive treatments,” Dash’s mother, Amanda, said at the event where he received his costume.
She added that the approval “shows that we were able to kind of help with the movement forward of [new treatment], just like the families that did that before us for the treatments that he already has.”
As for Dash, he’ll be firing up his thrusters to take his costume for a ride this Halloween.
“I am excited just to show everybody this super-duper cool costume that Magic Wheelchair made for me and just right around the neighborhood, trick or treating,” he said.
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