Avonmore parents enter disabled child in contest for wheelchair-accessible van
It's a beautiful spring day, and like any other 9-year-old boy, Jonathan March wants to go outside.
“He loves being outdoors,” said his mother, Mandi, inside their Avonmore home. “He loves the trail and likes to go down to the river.
“He loves to take trips to the beach, and go shopping.”
Mandi March fears those days of travel might soon end for her son.
Jonathan has Pelizaeus-Merzbacher disease, a rare genetic disorder. He has never talked nor walked.
He's undergone an intense therapy regimen, monthly, since he was 7 months old.
He's had heel cord lengthening surgery and Botox injections to assist with his stiff and rigid muscles and to increase his muscle tone.
But the disease doesn't affect the wheelchair user's ability to grow.
“Everywhere we go, I have to lift him and put him in the car,” Mandi March said of trips with her son in the family's Subaru Forester. “He weighs 60 pounds now and he's only going to get bigger.
“My husband (Shawn) is 6-foot, and he'll probably get that big,” she said. “We won't be able to lift him in a couple of years.
“My husband works six days a week,” she continued. “So he's not always here to help me lift him.”
That's why the Marches entered Jonathan in the National Mobility Awareness Month contest to for a new, wheelchair accessible van.
“They run about $50,000,” Mandi March said. “We just can't afford that.”
March said that without a specially designed van, Jonathan's lifestyle would change.
“I'm afraid he might be stuck there,” she said, pointing to the blond-haired little boy sitting on the couch, eating a marshmallow Peep. “He's been able to live a pretty full life up until now.”
Cassie Polliard, Jonathan's home health aide who helps care for him, was at a loss for what the van would mean to him. “It would change his life in the future,” she said, handing Jonathan another Easter treat. “He loves to go places, and this would make that possible for him.”
While the Marches hope they win the van, Mandi March said she's using the contest in another way.
“I want to spread the word about what it's like for wheelchair-bound people,” she said. “Maybe if you have a typical child, you don't really think about things like this.
“This could let people see.”
March said she knows that folks who hear Jonathan's story will want to help him.
“We just want to maintain the life he's had,” she said. “We want to make him happy.”
R.A. Monti is a freelance writer for Trib Total Media.
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