Red Deerians will raise money this weekend to help buy a new wheelchair for a five-year-old boy with Spinal Muscular Atrophy.
Nile Froese was born with the genetic neuromuscular disorder, which affects the nerve cells that control voluntary muscles. Babies with SMA (Type 2) can sit without support, however most cannot stand or walk independently.
On Sunday, the New Wheels for Nile fundraiser will be held at Ministry Tattoo (5028 50 Ave.), where his father Jayden Froese works. The event will start at 10 a.m. and features walk-in tattoos, raffles, auctions and more.
“My co-workers made it happen. I was telling my co-worker Joshua Neufeld that there’s a wheelchair we have to save for that’s going to be $20,000 or so,” said Jayden Froese.
“He had the idea to do a tattoo fundraiser. There are going to be artists doing flash tattoos all day, with all proceeds going towards the wheelchair. Everyone got behind it right away, which is pretty awesome.”
Stefani Froese, Nile’s mother, praised the efforts of her husband’s co-workers for hosting this fundraiser.
“The second they hear there is something that needs support, they are all over it,” said Stefani Froese.
“They said, ‘We’re donating our whole day, all of our equipment and service will be free for that day and all of the process are going towards Nile.’ They gathered around Jayden as a family.”
The couple describes Nile as an adventurous, motivated and independent child.
“He’s very passionate about everything. He loves hard, he works hard and he definitely knows what he wants. He’s very active and he has been since he was little. The second he got wheels – he was about one – he was ripping around already,” said Stefani Froese.
His new wheelchair would help him get around in any terrain.
“He’s going to be getting wheels that are good in grass, dirt or snow even. The front wheel will be bigger so he can jump over bumps a little bit better. There’s going to be a heated seat because children with SMA have low muscle mass, so they don’t produce good body heat – that heated seat will keep him warmer on those cold days,” Jayden Froese explained
“There’s also going to be a light bar underneath so he can see in the dark, which will help him get around. Also he’s just going to think it’s super awesome and it’s one more fun thing for him.
“He’s attached to that chair for a large portion of his day. We want to make it a more enjoyable experience for him.”
Raising a child with a physical disability “takes a village,” Jayden Froese added.
“It’s not just us who do this. We rely on family, friends, our church … to get that extra help. We do it together,” he said.
On top of Sunday’s fundraiser, there is a GoFundMe page to raise money for a new wheelchair for Nile. To find the page, search “New Wheels for Nile” on www.gofundme.com.
sean.mcintosh@reddeeradvocate.com
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