Weston Bernau from Fountain is a typical 7-year-old boy who loves playing with his extensive toy tractor collection, riding his horse, and ziplining at summer camp. He also happens to have Congenital Muscular Dystrophy and uses a green John Deere power wheelchair to get around.
Weston was diagnosed with Muscular Dystrophy when he was a year old. The disease weakens the muscles and is progressive. Some people with it are able to walk, others have to use wheelchairs and/or various mobility aids. But Weston doesn’t let his disability stop him from doing what he loves and being a normal kid. One of his favorite things to do is whip donuts in his power chair.
Weston was recently chosen as the Southeast Minnesota Muscular Dystrophy Association ambassador and is happy about his new role with the organization. “All the attention is a little overwhelming, but Weston is excited,” his mom, Dawn said. He’ll hold the position for one year and will represent the MDA at various events during that time. He will also be an advocate for others living with Muscular Dystrophy and other neuromuscular diseases. His first appearance was at the Rochester Applebees for their fundraising event on February 27. He will also get to accept the donation check from Ace Hardware for the MDA as the face of the organization.
Ambassadors for MDA are selected depending on their involvement with various MDA programs. Weston and his family were instrumental in bringing the MDA Muscle Walk to Rochester and show up each year to participate with their fundraising team, Weston’s Wranglers, wearing their green and yellow team shirts featuring cowboys riding horses, which combine Weston’s love of horse riding and John Deere tractors.
“Weston is confident and charismatic for his age and certainly not shy when it comes to meeting new people!” MDA fundraising coordinator Anya Moran commented. “We like to engage families that are comfortable sharing their story and journey with muscle disease.”
The MDA works to raise money to fund research for a cure, help families who are touched by Muscular Dystrophy and related diseases. “In the past 24 months, five treatments have been approved by the FDA for different forms of muscle disease including Duchenne MD, Spinal Muscular Atrophy, and ALS,” Moran explained. The organization also runs programs to support affected individuals and their families such as the MDA Summer Camp for kids with Muscular Dystrophy.
One of the ways they raise money for the camp is with the MDA Shamrock fundraiser. Starting in February and going through the end of March, shamrocks are sold at participating retailers. The shamrocks help cover the cost for kids with Muscular Dystrophy and related conditions to attend the MDA Summer Camp each year. This summer will be Weston’s third year going to the camp. “He loves summer camp and being independent with other kids like him,” Dawn explained. “They learn to be more independent at camp, be more confident since they’re around other kids like them, and do activities that they wouldn’t normally get to do.”
Just a few of the activities that kids can participate in while they’re at camp are ziplining, fishing, swimming, horseback riding, pontoon rides, etc. Each child is assigned a one-on-one camp counselor to take care of their needs for the week that they’re there. It allows caregivers a break and gives the kids a chance to be with other kids like them.
Dawn hopes that Weston’s position as ambassador will show people that despite the wheelchair and physical limitations, he and others with similar issues are just like everybody else. Specifically, Weston has the opportunity to raise awareness for neuromuscular diseases among his peers.
Representatives from Minnesota’s MDA office will visit Weston’s class at Fillmore Central on March 7 to show an awareness presentation to his classmates and announce his title as ambassador to them.
“The community can show its support for Weston and other children and adults affected by Muscular Dystrophy by joining the Bernau’s muscle walk team, Weston’s Wranglers, on Saturday September 15 for our annual muscle walk!” Moran noted.
You can learn more about the Muscular Dystrophy Association and find out which retailers are participating in the shamrock fundraiser at mda.org.
You can also follow the local MDA efforts at facebook.com/mdaminnesota.