For Cheryle Elliot and her son, Dakota, the Muscular Dystrophy Association is like a part of the family.
From selling MDA Shamrocks to attending their local MDA Lock-Up event to participating in Muscle Walk, they do it all — with Dakota smiling and laughing all the way through.
Dakota was born with congenital myotonic muscular dystrophy, which affects his ability to speak, to eat solid foods and to walk on his own. He uses some sign language to communicate, as well as hand gestures and facial expressions, and gets around using a wheelchair and a walker. Now 11 years old, he’s a local MDA ambassador in Connecticut, where he lives.
“It’s a struggle at times, because it’s hard for him to tell me what he wants. But overall, his demeanor is very enthusiastic and he’s a happy kid. He loves to flirt,” Cheryle says, laughing.
Dakota personifies the live unlimited spirit. He displays strength and courage every day despite the physical and societal limits diseases like congenital myotonic muscular dystrophy. His unyielding resolve is a reminder for us all to be relentless in our pursuit to defy limits we or others often impose on ourselves.
And that’s just what he does as a local goodwill ambassador.Dakota travels around Connecticut with his family, raising awareness of muscular dystrophy. He makes posters, sells Shamrocks and sports his MDA t-shirt whenever and wherever he can.
“Almost every day of the week, we visit different places in Connecticut. He enjoys it very much,” Cheryle says. “He’ll tell us he wants his MDA shirt on using his signs. He’ll point at uncle and dad to encourage them to put their shirts on and gets mad if they don’t follow his instructions.”
Dakota should be pretty happy during these coming months because the whole family will likely be sporting those shirts most of the summer, which is chock full of MDA events.
One of their favorites is their local Muscle Walk in East Hartford. They started participating in 2009 to both support MDA and to educate others about Dakota’s disease.
“At Muscle Walk, we started getting the word out about the type of MD my son has, so others are aware and also get to know someone with it,” Cheryle says.
“It’s a great experience. It’s great to see how others are affected by MD and to learn more about living with MD because other people might know more than you do,” Cheryle says. “It’s a great learning experience.”
Capping off the family’s busy month of June is the highlight of Dakota’s entire summer — MDA Summer Camp. In fact, Dakota is so excited about his time at camp that Cheryle has to hide his suitcase until it’s time to go. Dakota gets so amped at the sight of that suitcase that the family is “in big trouble” if he sees it when they’re not planning on going anywhere, Cheryle says.
With his zest for life, Dakota adores hanging with his loved ones at the Muscle Walk and gets a kick out of meeting new people at camp, but these events aren’t only about having fun. And it’s about more than living unlimited, too.
They’re also ways to connect with other families affected by muscle-debilitating diseases and to give back to MDA. Cheryle says MDA has always been there for Dakota and her family, helping them get wheelchairs and medical equipment and connecting them to resources.
Most of all, the family’s participation in these events is about raising awareness of muscular dystrophy, so that one day Cheryle’s dream will be fulfilled. She wants a cure, so one day her son can walk on his own and live a fuller life, she says.
That’s why they’ll continue participating in Muscle Walk: to raise money, tell their story, boost awareness and push research forward.
“There are so many types out there and the type he has, there’s really not much out there for research. It’s needed,” says Cheryle.