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Edmonton-area boy born in the shape of a ‘C’ receives custom wheelchair: ‘He can be like everybody else’

Click to play video: 'Alberta boy born in the shape of a ‘C’ receives custom wheelchair'
Alberta boy born in the shape of a ‘C’ receives custom wheelchair
WATCH ABOVE: A Sherwood Park boy who was born in the shape of a "C" has some new equipment to help him fulfill his potential. Su-Ling Goh explains – Nov 13, 2017

Editor’s note: This article originally stated the wheelchair cost $13,000. However, the owner of the company that provided the family with the chair — Active Healthcare Solutions — said the chair cost $9,080.

An Edmonton-area boy who was born with a rare neuromuscular disorder that caused his spine to literally bend backwards in a C shape, has received a piece of equipment that will greatly improve his quality of life.

“It’s a game changer for us. A game changer,” said Corina Heppner, Rossy Hipkin’s mother. “He can be like everybody else now.”

Hipkin was born with severe scoliosis and arthrogryposis multiplex congenita (AMC), which can greatly reduce mobility in the joints and muscles.

The condition was spotted while Hipkin was still in the womb; at 20 weeks, the curve in his spine extended past 90 degrees.

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Rossy Hipkin was born with severe scoliosis and Arthrogryposis Multiplex Congenita (AMC). Supplied to Global News

Due to reduced muscle tone, AMC has made it difficult for Hipkin to use his arms, so he learned to use his feet for many daily activities. Most recently, he’s learned to pull himself up and use his feet to eat with a fork.

“It’s huge. Imagine laying on the floor, not being able to use your arms, but crawling up onto a couch. It’s major. It’s huge. It’s something we never thought we’d see — ever.”

READ MORE: Edmonton baby born in the shape of a ‘C’ defies medical diagnosis

Late last week, the family experienced another milestone. On Friday, Hipkin received a set of wheels that will make getting around much easier for the one-and-a-half-year-old.

“We picked up his new power mobility chair, the Wizzybug, and he’s learning how to drive that now. He loves it,” Heppner said.

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“It’s so important for him to keep up with the kids his age. They can walk, they can touch things, they can play with other kids their age and Rossy just couldn’t do that,” she said. “This chair gave him the ability to play with his brothers.”

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Rossy Hipkin in his whizzy bug. Su-Ling Goh, Global News
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Rossy Hipkin pulls himself up on the couch. Su-Ling Goh, Global News
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Rossy Hipkin in his whizzy bug. Su-Ling Goh, Global News
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Rossy Hipkin in his whizzy bug. Su-Ling Goh, Global News
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Rossy Hipkin in his whizzy bug. Su-Ling Goh, Global News

Hipkin uses his feet to steer the wheelchair, secured after months of fundraising, as it was not covered by health care. The chair came with a price tag of $9,080.

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Heppner said her family could not be more grateful to all those across the city who pitched in to help.

“It was a lot of people, a lot of work. The community came together and helped him get his chair,” she said. “We didn’t think we could do it otherwise. It’s a lot of money.

“It’s a really amazing feeling. It really does take a village to raise a child.”

Doctors didn’t think Hipkin would survive — one in three kids with AMC doesn’t make it to their first birthday. But more than a year later he’s thriving, much to the surprise of his family and health-care workers.

“Rossy’s probably the only boy that we’ve celebrated when he started playing in the dog bowl,” Heppner said with a laugh. “It’s all these things we didn’t think we’d ever get to see.”

Watch below: Su-Ling Goh introduces us to a little boy whose body is shaped like a C. He’s baffled his medical team, exceeding all expectations. (Filed June 2017).

Click to play video: 'Edmonton Health Matters: preventing organ rejection & ‘C Man’'
Edmonton Health Matters: preventing organ rejection & ‘C Man’

To follow Hipkin’s journey, check out the Rossy’s Road Facebook page.

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With files from Su-Ling Goh, Global News.

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