Suburban Heroes: McHenry family goes the distance for muscular dystrophy

In some ways, Henry Betts is like other 5-year olds - scurrying about his home in McHenry, playing with his big sister, Grace, and proudly showing a visitor his Transformers toy.

But Henry has merosin-deficient congenital muscular dystrophy. His legs can't bear his body weight and he can't walk. He has been in a wheelchair since the age of 2 and has known no other means of getting around.

That doesn't seem to bother Henry, a social kid who likes to be part of everything. He is an inspiration to his parents, Stephanie and Jon, who have become fundraising juggernauts for the Muscular Dystrophy Association.

"He truly shows me what being strong means. As we have on the back of our (fundraising) shirts, 'True strength is in the soul and spirit, not in muscles,'" says mom, Stephanie.

"He's one of the strongest little people I know. He had hip surgery last year and he didn't complain about anything," she added.

The Betts' involvement the past few years with Byline Bank Chicago Spring Half Marathon & 10K, has raised money for 180 research grants worldwide; care and resource centers; and, summer camps that provide at no cost to families a week of barrier-free fun to others with various forms of muscular dystrophy.

And while it may be a small group, Henry's Heroes, is a powerful force for the larger effort. It was one of 22 teams that participated in the recent half marathon, raising in excess of $15,000.

"They were our top fundraising team," said April Tunnicliff, national director, endurance, for MDA. They've been at or near the top since 2015.

"It's pretty cool when you think about how much they've accomplished," Tunnicliff said of the Betts family.

Individual teams run under the auspices of Team Momentum, the endurance fundraising program for MDA. The concept is people moving their muscles to strengthen the muscles of those with muscular dystrophy. There are 10 races this year, including the Chicago Marathon, Tunnicliff said.

In 2014, family friend Kim Kreiling joined Team Momentum in honor of Henry, which is how the Betts learned of the broader effort. More friends signed on and Henry's Heroes was formed.

"We didn't run that first year," Stephanie said. "I was never going to run a marathon." But they couldn't sit on the sidelines and have participated in the half and full marathons every year since.

The family has sold T-shirts and Jon's brother, Chris, owner of Transient Artisan Ales in Michigan, donated $1 from every bottle of a special brew called 'Henry' to the cause.

"It was our amazing introduction to Team Momentum that literally changed our lives," she added.