Luke Fox, age 7, of Waldo loves biking, soccer, Legos, and Minecraft. He also loves technology and figuring out how things work.
“He has an incredible mind on him,” says father Robert Fox. “Luke came running down the other day, saying, ‘Dad! Did you know your surge protector has a connector for an Ethernet cable?’ You go to the high school and I doubt anyone else knows that.”
Luke shares something in common with one in 5,000 other boys: a genetic disease. Robert and Heidi (Beringer) Fox missed a call from a doctor. A voice mail on Dec. 11, 2015, changed their lives: Luke has Duchenne muscular dystrophy (DMD). This progressive, fatal genetic illness often puts kids into a wheelchair by middle school and ends life in their teens or 20s. There is no cure.
“It was a heck of a Christmas present,” Robert Fox remembers.
Reeling, Heidi and Robert decided to help Luke live his best life.
“Medicine was so different 100 years ago,” Heidi Fox says. “Now we now have Nationwide Children’s muscular dystrophy clinic practically in our backyard. There Luke gets the best, cutting-edge care.”
Luke goes to the clinic regularly to see a physical therapist, a cardiologist, a neuromuscular doctor, and a pulmonologist. They enrolled him in a clinical trial. The Marion County Board of Developmental Disabilities and River Valley Local Schools offered support.
About five years ago, Heidi expressed interest in the Duchenne Dash 5K for the Little Hercules Foundation, a nonprofit in Dublin run by two mothers whose children have DMD. Friends, family members, church members, and neighbors jumped on board Team Luke Fox.
Krista Fox Chrisman, Luke’s aunt, was the first to sign up. This teacher holds nickel wars to raise money and throws pizza parties for the winning class. Heidi, Luke, and Tyler Fox have gone to thank the students at Hayes Intermediate School in Grove City and answer their questions.
This year, the Foxes decided to organize a 5K for Parent Project Muscular Dystrophy. At the same time, the Waldo Summer Festival was looking for a charity event. In less than a month, the Race to End Duchenne 5K came together.
“I’m just amazed by the support from the Waldo community,” Robert said. “It will be even bigger and better next year.”
Neighbors donated cases of water. Sue Klingel organized the event. Peace Community UCC sponsored walkers. A group of 30 walkers, runners, and volunteers raised $4,600 on July 16.
“Every time we talk about Luke, good things happen,” Robert said.
The future for Luke and kids like him are getting brighter thanks to these efforts.
“15 years ago, there was no hope whatsoever. It was: just give them steroids, keep them comfortable and wait for them to die. Now we have a lot of hope these kids can live normal lives,” Robert Fox said.
The life expectancy for kids with DMD has increased by a decade.
“They’ve gone from 20 years to 30 years. These kids are graduating from college. Before, you’d be lucky if they’d make it through high school,” Robert said. “That’s thanks to Parent Project Muscular Dystrophy and the Little Hercules Foundation.”
A few weeks ago, drug company Sarepta announced it is filing for accelerated approval for SRP-9001, a gene transfer drug to treat muscular dystrophy. The Food and Drug Administration may rule on it by the time the next Luke Fox 5K is held in July 2023.
“It’s been a struggle sometimes. It’s harder when he gets tired of walking because you realize someday he’s not going to be walking, but I do what I do to make sure he can walk across the stage and get his diploma from Ohio State. I want him to follow in Heidi’s footsteps. I don’t want him to follow mine!” Robert said with a laugh.
Donations are still being accepted at https://bit.ly/LukeFox5K. Volunteers to plan next year’s event are needed. Email Robert at firstname.lastname@example.org.