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"Make-a-wish" granted for child with neurological disorder

MARSHALL COUNTY, Ind. -- A five-year-old boy with a degenerative neurological disorder wished for a rainbow slide with a pot of gold at the bottom. The family says Make-a-Wish Foundation and a local company went above and beyond in granting it.

In a packed room in Plymouth, five-year-old Steven Hoese's family and Southwire volunteers unveiled his therapeutic playhouse Tuesday afternoon.

Steven has a degenerative neurological disorder that's pretty rare in the United States: Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay, or ARSACS.

It's most often found in the French Quebec region of Canada.

The Hoeses said they've connected on Facebook with 10 to 12 other families in the United States who have a loved one living with the disorder.

They say it limits his abilities to move like other kids, so running and jumping are more difficult.

“Definitely the delays in walking, delays in talking, cognitive delays, gross motor, fine motor, all of those were involved," said Steven's mom, Lori Hoese. "And you’ll watch when he walks, he’s got an awkward gait, a very guarded gait, keeps his hands out."

She says over time, studies say he'll lose the ability for his brain to communicate with his muscles. 

"The nerve communication will break down, and it will just continually work up. So when he’s 40 or 50, he’ll lose the ability to swallow, he’ll lose the ability to breathe," she said.

"But they say every case is different, so what happened to one won’t necessarily happen to all, so we have hope," said Steven's dad, Steven.

Hopeful for a solution, Mr. Hoese contacted the Make-a-Wish Foundation to at least get him a rainbow slide.

“In my heart of hearts and in my mind, and in my prayers, god if you’ll just send us a builder who had a vision, it could go anywhere," said Lori.

That's where the Bremen branch of wire company Southwire came in with its Project GIFT volunteer effort.

“We have a good crew of guys that were just constantly coming up with something new and thinking up some things that would be good for therapy," said Jodie Overmyer, the Project GIFT Coordinator.

They consulted his therapists, and with over 350 volunteer hours, built him in essence a therapeutic playhouse.

“We can’t say thanks enough to Southwire. The equipment make a wish provided, but had Southwire not taken on the project, it would never have gotten to this magnitude…Southwire just took it over the top," said Lori.

Other companies that helped make Steven's wish come true are the following: 

  • Ace Builders of Nappanee
  • Core Mechanical of Etna Green
  • Mid-City Supply and Dilling Group of Warsaw
  • Digger Specialties of Bremen


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