Living with a neuromuscular disease

Eye on KELOLAND

Neuromuscular diseases are rare, however, the number of people who have them in South Dakota is larger than many small towns in the state. That’s why the Muscular Dystrophy Association is working to bring cures and treatments to those individuals. It needs your support in order to help families like the Van Overbekes.

Meet Micah and Eli. They are two brothers, and you’ll often find them listening to music and dancing. It doesn’t take long for Micah to steal the spotlight, and show off his dance moves. This is a common occurrence in the Van Overbeke household, a place full of life, love, and laughter.

Stacy and Jeff Van Overbeke adopted Eli, 6, and Micah, 8, and quickly knew — no matter where they were born — these two are their sons.

“They’re just so amazing. I love my boys,” Stacy said.

That love comes in handy, because this mom and dad knew Micah would need some extra support. He was born with a genetic neuromuscular disease called Myotonic Dystrophy, type one. It’s a progressive disease that weakens the muscles.

“It affects every system in his body. It affects his brain, it affects his heart, his lungs, his muscles in his hands and feet and it affects his speech,” Stacy said.

When he was little, Stacy says he couldn’t eat and needed a feeding tube. A lot has changed.

“Now he eats everything. He eats steak now!” Stacy said.

It’s true, Micah doesn’t let his condition slow him down.

“After a certain point in time, you forget he has a disability and you move forward,” Jeff said.

Off camera, the six-year-old was very chatty. However, when I tried to interview him, he got a little shy, which is understandable when a big-haired stranger comes into your house and starts asking questions. But Micah opened up when we gave him the chance to be the reporter and interview his dad. His first question? Where did they put the family dog, Owen.

Micah: “Where did we put Owen?”
Jeff: “We did put Owen in the car, didn’t we?”
Micah: “Why?”
Jeff: “Because he was going to bark.”
Micah: “Is he asleep?”
Jeff: “He’s probably sleeping.”

This is just one glimpse into the life of a family living with a neuromuscular disease, but the Van Overbekes aren’t alone. There are 400 people with these conditions in South Dakota.

“400 people. When you think in terms of a cancer diagnosis, along those lines, doesn’t seem like a lot of people across the state. But, when you think in terms of rare conditions, it’s quite a lot of people,” Erin Hill, MDA Development Director, said.

Here’s how you can help. On Friday, October 18, the organization is holding its MDA Toast to Life event. It’s at the Old Courthouse Museum in Downtown Sioux Falls. The fundraiser has live music, live art, and various ways you can donate. The money helps pay for research for treatments and possible cures, but there’s more.

“Awareness really is the biggest piece of the whole thing. If people aren’t aware of what’s going on, they don’t know to help and they don’t know how to help,” Hill said.

Stacy says MDA’s work has helped the family with therapies, information, and support.

“Sometimes you feel like you’re on a deserted island, and it’s nice to have a community,” Stacy said.

Which brings us back to these Micah and Eli.

Brady Mallory: “What do you love about being a big brother?”
Eli: “I get to spend every day with Micah.”

Today, efforts to support people with neuromuscular diseases could help Eli’s brother, Micah.

“Micah’s perfect the way he is. If we could slow down the progression to where he might be able to enjoy his adult years, I think that would be the main goal.

Tomorrow, it could be your own brother, sister, mother, father, or child.

MDA Toast to Life is October 18, at 6 p.m. at the Old Courthouse Museum. You can order tickets on its Facebook page or you can go here. If you can’t make it to the event, but still want to help, you can donate online.

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