The Waldo community is working to support children and their families with a debilitating, life-limiting illness called Duchenne muscular dystrophy. The community is raising funds for children who need supportive equipment at the upcoming Run for Luke 5K which is named in honor of a local boy with this disease. The 5K will be held on Saturday, July 20 at 8 a.m. at the Waldo Summer Festival.
Honoree Luke Fox Inspires Others
Luke Fox, age 9, is a bright, curious boy who just finished third grade at River Valley Local Schools. Like one in 3,500 boys, Luke was diagnosed with Duchenne muscular dystrophy. This disease weakens the muscles, robbing children of their ability to walk in middle school. As it attacks the heart and lungs, the life expectancy is in their 20s or 30s.
Luke was diagnosed as an infant. His parents, Robert and Heidi Fox, put him in clinical trials. He receives steroids, the only current treatment to lessen symptoms. Luke has received supportive services through the Marion County Board of Developmental Disabilities and the school, including physical, occupational and speech therapies.
This active kid love playing baseball like his older brother, Tyler, on a team for kids with disabilities called Unstoppables Youth Sports which plays in Marengo. His parents hope the new gene therapies in the works may one day enable him to keep walking and improve his life.
Fox Family Creates Run for Luke
The first Run for Luke was in 2022 at the Waldo Summer Festival. This year, the run benefits My DMD Hero, a nonprofit started by a central Ohio family dealing with this genetic disease. Founder and father Christopher Andrews came to speak at Peace Community United Church of Christ in Waldo in June.
The Andrews Family Blindsided by Genetic Illness
“Eight years ago, I’d never heard of Duchenne’s,” Andrews said.
At the time, they had two children and a third one on the way. Their daughter, Lana, ran circles around the Brock, the oldest child. Chris and his wife, Trish, thought Brock didn’t like to run or climb. They thought he was a clumsy kid. It turned out, Brock’s couldn’t run, climb, or walk without falling due to Duchenne’s.
“When a family gets this news, it is heartbreaking,” Andrews said.
Rolling the Genetic Dice
With this genetic disease, boys have a 50/50 chance of getting it. The Andrews’ youngest son, Graham, ran and jumped and climbed like Lana. However, his gait was a little different. Graham was diagnosed with Duchenne’s, too.
The Andrews’ world was turned upside down. While insurance paid for some critical needs as the boys’ health deteriorated, many expenses weren’t covered.
“There are so many things you need to make life livable, to have a quality of life and to get out of the house,” Andrews said. Ramps, bathtub lifts and stair lifts are among those needs.
Other needs include wheelchairs to go on grass or sand so children can go to playgrounds or enjoy the beach.
“Between the ages of 6 and 10, a child is losing strength, and so things like a trip to the zoo becomes so hard. A child who loves to go see the animals – they don’t want to be pushed around in a stroller. They want some independence, wo they need a travel wheelchair or a scooter,” Andrews said.
Andrews Family Receives Help and then Helps Others
Andrews, an associate minister at a Baptist church in Canal Winchester, asked his community for help. The family then started My DMD hero in 2019 to help other families.
“The goal is to meet Duchenne families where they are, give them hope, and meet the practical needs of children with Duchenne muscular dystrophy,” Andrews said.
Families can apply on myDMDhero.com. The nonprofit connects them to resources, community, and works to meet their needs.
“One grandmother is raising her 10-year-old grandson named Daniel. Swimming is the best exercise for children with Duchenne’s – and really the only one they can do,” Andrews said. “They have a pool, but the grandmother can’t lift him in,” said Andrews. “We’re trying to provide a pool lift. It costs about $2,000 plus the cost of installation.”
Three other families have also applied for needs.
Meet Fox & Andrews families on July 20
The Fox and Andrews families will be at the Run for Luke 5K on July 20 in Waldo, where they hope to raise $10,000 for My DMD Hero to provide these needs.
For more information:
Run for Luke 2024 – Waldo Summer Festival (givebutter.com)
Welcome to MCBDD (marioncountydd.org)
Muscular dystrophy – Symptoms & causes – Mayo Clinic
Home – Unstoppables Youth Sports (unstoppablesports.org)
MarionMade! is a program of Marion Technical College.
