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Kansas City family in need of wheelchair accessible van for sons with rare genetic muscular disorder

Posted at 4:24 PM, Jul 25, 2021
and last updated 2021-07-25 18:39:08-04

KANSAS CITY, Mo. — A Kansas City family is in desperate need of a wheelchair accessible van and lift after one of their sons with Duchenne muscular dystrophy fell from the couch and sustained an injury. DMD is a rare, x-linked genetic disorder that gradually weakens the muscles.

Parents Thomas and Jenna Lewis recall the August of 2012 when their sons Alex and Bryce were diagnosed.

“You think that you’re prepared, you think that you are going to be ready for this when it happens, and you’re just not. Not at all," Jenna said. “And then to know — I find out that I was the carrier of it. I’m the one who gave it to them. I mean, not knowingly, but just the guilt ... It’s just absolutely awful.”

DMD leads to serious medical problems, especially with the heart and lungs. Most people who live with the disorder are bound to a wheelchair by age 10-12 and have a life expectancy of 20-30 years.

“Just not being able to do the normal things,” said Thomas when asked what the hardest part of their journey is. “Being able to play catch with your son, being able to go on a walk — the normal things like going to a grocery store. All that kind of stuff.”

Jenna says much of their treatment options are a double-edged sword, and there always seems to be another obstacle for a disorder with no known cure. To make their day-to-day operations even more difficult, one of their sons suffered an injury a week from Friday.

“He was just getting up off the couch and he fell. And fell just right and broke his femur,” Jenna said. “Unfortunately, one of the side effects of steroids is you have bone density issues.”

With years of medical bills, the numbers are already stacking up. They have applied for grants to no avail and do not qualify for Medicaid. In the midst of the boys' regular treatments, the family is desperately hoping to buy a new wheelchair accessible van.

“We tried to buy a ramp for our van just to have something, just a portable ramp to get him in, and it was such a … it didn't fit, it didn't even work. And so, my husband is physically lifting him and placing him in the seat, because we have no other way of getting him in there,” Jenna said.

Thomas will be returning to work soon, leaving Jenna to take care of the boys. While the road may be anything but easy, the couple says their boys are enough to keep going.

“We try to do the best that we can with what we have, and I just worry about their future,” Jenna said.

A GoFundMe page has been set up for the Lewis family. All the money raised will go toward a new van and paying Alex and Bryce's medical bills.