Mill Creek’s Maddie Holt has spent her entire life in a small wheelchair.
“Maddie has something called Zellweger syndrome, it’s a terminal genetic disease that destroys the white matter of the brain,” Maddie’s mom, Meagan Holt said while her daughter snoozed in her chair. “There’s no cure or course of treatment. She has liver dysfunction that turned into failure in July, anemia, coagulopathy, seizures. Everything except her heart and lungs is pretty much affected. Most kids don’t survive past a year.”
But Maddie’s 5th birthday is the day after Halloween and Meagan is throwing her a unicorn-theme birthday party. The party will be extra special, thanks to a non-profit called Magic Wheelchair, who has decked out her chair in an extravagant costume.
“We call them costumes, epic costumes, but really that word does a disservice to the things that we build,” said Seattle’s Chad Larsen, a board member and maker at Magic Wheelchair, a non-profit made up of volunteers who build elaborate float-like costumes around kids’ wheelchairs.
Magic Wheelchair’s founders, Portland’s Ryan and Lana Weimer, have three children who use wheelchairs. One Halloween, Ryan transformed his son’s wheelchair into a huge pirate ship. When other parents saw what he created, they requested he make costumes for their kids’ chairs. So he launched a Kickstarter account and Magic Wheelchair was born.
“Our mission is to provide every kid in a wheelchair with an epic Halloween costume for their chairs,” Weimer says in a video on the website.
The costumes are epic. They usually have to be disassembled to fit through doorways and reassembled on the other side. Larsen and his partner, fashion designer and Magic Wheelchair board member, Jamie Stratton, have taken creativity and invention to new levels over the last three years they’ve been involved.
“We started with a Teenage Mutant Ninja Turtle build,” Stratton said. “It had all kinds of elaborate features like a pizza warming oven in the back, and a multi-firing Nerf gun that was operable inside of the build.”
“In the Batmobile that we recently built, we designed a Nerf cannon system that launched the missiles,” Larsen said. “We also had GPS, we had a backup camera, it had a full working sound system and custom lights that helped him navigate. Pretty fantastic!”
When it came to Maddie’s build, Holt gave Larsen and Stratten just a little bit of direction.
“I said, ‘Let’s have Maddie be a princess riding a unicorn, somehow,'” Holt said.
The end result is a flower covered princess carriage, led by a unicorn and a seahorse. Maddie is legally deaf and blind so they included a lot of sensory experiences, like a vibrating chair, and used neon colors that she can actually see.
“They created a switch system so Maddie controls everything,” Holt said. “There’s a bubble machine that she can blow bubbles, she can shake the seat, she can blow a confetti cannon. We have one toy right now that’s activated with a switch for her. So really, until she had this chair, she only had one toy she could play with all by herself. So this is not just a wheelchair but it’s going to be a huge part of that sensory experience for her.”
The costume was presented to Maddie and her family at the Boo Bash in Mukilteo on Sunday. Public reveals help get the community involved and aware, which is one of Magic Wheelchair’s missions.
“It’s hard to not get emotional about it,” Holt said, through tears. “I think for us, we don’t get a lot of acceptance. Especially when people see Maddie, they don’t really know how to approach her or what’s okay, what’s not okay. Yesterday was the first time that I’ve gone somewhere in public like that and seen kids run to her, happy, and wanting to know what’s on the chair. So to have an experience like a normal child, and for a moment it was like she was just a normal kid dressed up in a costume … I really can’t explain what that feels like. For me it’s more social acceptance and getting people to see that they’re just people.”
There are currently Magic Wheelchair volunteers making costumes in 70 locations, but they are always looking for volunteers and donations. If you’d like to donate, volunteer or want to request a costume for your child’s wheelchair click here.