School, Family, Friends Support Elmhurst Boy with Duchenne Muscular Dystrophy

Something has changed recently for Marshall Bell, a fourth grader at Lincoln Elementary School in Elmhurst. He’s gained more independence, he’s moving faster and he even caught four touchdown passes at recess one day.

Marshall began using an electric wheelchair a little more than a month ago, when friends loaned the chair to the Bell family. Play time used to mean board games and stationary activities, but with the electric wheelchair, Marshall can roll around the blacktop, shoot hoops and even play football.

The loaner chair isn’t perfect though. It isn’t fully supportive, it wasn’t designed for Marshall’s size or for the specific needs of someone who has Duchenne muscular dystrophy. It’s kept at the school because it’s difficult for Marshall’s parents, Judy and Gerald Bell, to transport it.

But it’s given Marshall back some of the independence he’s gradually lost since he began displaying signs of Duchenne’s. Judy and Gerald are hoping to extend that independence with a new chair for Marshall, a ramp for the home and a vehicle that can transport the chair. They’ve started a gofundme page to raise money for the new chair, which Judy said costs more than a car.

Marshall was diagnosed when he was 6 years old, nearly four years ago. His parents say they noticed he was having a hard time walking up stairs and getting up from the floor.

Duchenne muscular dystrophy occurs when the protein that helps keep muscles together is missing, according to the Muscular Dystrophy Association. It’s a genetic disorder that comes from a mutated gene on the X chromosome, so it mostly affects boys, though in rare cases girls can have Duchenne’s, too.

Muscles progressively weaken and deteriorate, beginning in the hips, thighs and shoulders, and by teenage years the heart and respiratory muscles are also affected, according to the association. There is no cure, but research has made it more common for people to survive into their 30s.

The Bells had never heard of Duchenne’s before Marshall’s doctor diagnosed him. They went to the doctor’s office and asked exactly what this disease means for Marshall. The doctor explained that it’s terminal.

“Those are the words you don’t ever ever want to hear about your kids, that it’s a terminal illness, and there’s a end of the road.” Judy said “There should be a light at the end of the tunnel, but there’s an end. And you can’t even take another road because there isn’t one right now.”

Judy said Marshall’s older brother and sister, Marc, 22, and Molly, 20, were hurt just as much by Marshall’s diagnosis as she and Gerald were. But they call and email Marshall often. The siblings even worked together to design wristbands that say “Muscles 4 Marshall,” with a basketball, football and soccerball on the band.

Gerald said their family has been one of the greatest sources of support. The Bells travel often to visit his side of the family in Mississippi, and their accommodations have made Marshall’s limitations an afterthought.

“It’s unbelievable how everybody’s just adapted regardless of circumstance,” he said.

Judy said they take things one day at a time, and they’re thankful for each day. They have faith that God will keep giving them another day, one at a time.

And Marshall seems to do a lot with those days. He’s good at school, he loves sports and games, and he rides a tandem bicycle. He can still stand just long enough to brush his teeth, and he likes being able to put on his own shirt. He recently won a school election to be class representative.

Erin Wedell, Marshall’s teacher, said he’s a great member of the class. She said he’s always happy, thankful, polite and respectful.

Wedell actually looped with her third grade class last year, so this is her second year teaching Marshall and his peers.

“He has taught me a ton,” Wedell said. “He’s such a positive kid, with everything he goes through, I can’t imagine everything he possibly thinks about. Everyone has bad days and you think, ‘Oh this is the worst day.’ And you look at Marshall and he always has a smile on his face with so many challenges so many things to overcome.”

Wedell works with Marshall’s full-time aid Lisa Hooker to help him through the school day. Wedell said “Ms. H,” as the students call her, organizes a lunch bunch for Marshall, does daily stretches with him and hangs with Marshall at recess.

Wedell said the whole class is supportive of Marshall. They joke and tell him to stop running in the hallway when he zips by in the chair. She said Marshall isn’t a fan of extra attention from her or the other students, but he likes it a little more now that he can cruise in the electric wheelchair.

“After he got this chair, he is constantly smiling,” she said. “He’s a ball of sunshine every day.”

Lauren Specht, a close friend of the Bells, said Wedell is an important advocate for Marshall, and “one of those special teachers you look back and your child will remember.” Specht’s son, Charlie, is also in Wedell’s class.

Specht met the Bells through church, and she noticed the progression of Marshall’s symptoms. When she felt ready to ask Judy about it, the two had a two-hour conversation standing on the sidewalk.

“I got the shock of a lifetime that he had Duchenne’s, and I found out it was terminal,” Specht said. “I’m a do-er. I said ‘How can we help?’”

Specht set up the gofundme for Marshall to raise money for a chair just for him, one he can use for a long time. She reads the encouraging emails and messages people send in support of Judy, Gerald and Marshall, and she’s not surprised by the love people show for the family. She works to share Marshall’s story and raise awareness about Duchenne’s.

“I worked tirelessly to explain to Judy that there are few people who could do what they need done on their own,” Specht said. “They’ve always been givers but at some point you have to accept the help and knowing it all comes from love.”

Marshall was recently selected to be the recipient for next year’s No Frills Fun Run. The run is a benefit organized by two Lincoln Elementary moms, and all the money raised can be used toward medical bills and the needs of the recipient. The date is set for March 1, 2015.

Gerald asked that the community keep his family in their prayers. He said miracles happen, and they’re praying for one to help Marshall.

Judy said Marshall knows that he has Duchenne’s. He deals with it each day, and he doesn’t think about himself much differently than before.

“We tell him that God makes some people walk and some people roll,” Judy said. “And this is what God has given us, and he knows you can handle it.”

To contribute to a new electric wheelchair for Marshall, visit his page on gofundme.

Photos courtesy of Muscles for Marshall Facebook page.