ROCKFORD, Mich. (WOOD) — Nearly two decades ago, a West Michigan family was hit with news that changed their lives forever.
Mitchell Peterson was diagnosed with Dechenne muscular dystrophy at an early age, and has had to overcome new challenges throughout his life.
In an effort to help make a difference for the next child diagnosed with the lethal disease, his family started Mitchell’s Run Thru Rockford, a 5K run and walk.
Over the last 19 years, the 40,000 runners have helped raise over $1 million to fight the disease.
“We never thought it would become what it has today,” event co-founder Steve Peterson said. “We knew that we had to do something to try to raise awareness and funding. We’re thrilled, it’s been an awesome 19 years.”
The event’s namesake was never able to take part in it due to his condition.
Even though he has very little movement now, he still dreams of running and hopes the event will someday help other kids who have to face the challenges of Duchenne muscular dystrophy.
“Mitch has always had a spirit like no one else I’ve ever known,” Steve Peterson, Mitchell’s father, said.
Getting a diagnosis
Like most preschoolers, Mitchell Peterson was full of curiosity and energy. But shortly before his third birthday, his parents began noticing subtle signs that something might be wrong.
“Mitchell has a younger brother Michael who’s 18 months younger,” Steve Peterson said, “We would notice that Michael was doing things that Mitchell couldn’t do. Michael would jump into the car faster, he would walk up a flight of stairs faster, it seemed odd to us.”
So the Peterson’s took Mitchell to their family doctor and then to a neurologist and quickly got an answer.
They never expected the answer they would get.
“March 3, 1999,” Steve Peterson said. “I’ll never forget that date.”
Mitchell Peterson was diagnosed with the most aggressive and lethal form of muscular dystrophy.
“The muscle essentially breaks down and can’t repair itself and so progressively throughout the life,” said Dr. Jeff Fletcher, MD, MS, FAAN at Metro Health Hospital. “The patient gets weaker and weaker and it can eventually affect your
hearts, your lungs, your breathing.”
Ultimately, it leads to lung or heart failure.
“And when you start looking it up on the internet,” Sandy Peterson said, “All you read is how soon they’re gonna die and just stuff like that.”
The diagnosis caught both of Mitchell’s parents off guard.
“It puts you on your heels,” Steve Peterson said. “It more than put you on your heels, it knocks you off your feet.”
At the time of the diagnosis, those with the terminal disease had a life expectancy of just 16-25.
“You have these certain hopes and dreams for your family,” Steve Peterson said, “And all of the sudden, in a blink of an eye, everything changed.”
Starting Mitchell’s Run Thru Rockford
After doctors told the Peterson’s there was absolutely nothing they could do to help change their son’s prognosis, Steve and Sandy switched their focus to research and awareness to help find a cure.
“(Steve) was a runner at that point, in 1999, and he just said alright, I’m going to do a 5K run to raise money,” Sandy Peterson said. “At the same time, my neighbor, two doors down came down and said, oh Dianne and I, which is my other neighbor, we want to do a silent auction.”
So, they put the two together and created Mitchell’s Run Thru Rockford in 1999. Over its first 18 years, more than $1 million has been raised in their son’s name for research and education.
“We’re amazed every year at the participation we get and the interest we get and the true spirit beyond trying to find a cure for Duchenne muscular dystrophy,” Steve Peterson said.
As the event has grown, so have Mitchell’s challenges.
He was in a wheelchair at age 9.
“It almost happened overnight,” Sandy Peterson said. “He started having trouble walking up the two stairs in the garage and then I would meet him at the door and start carrying him into the house. And it was two or three weeks later,
we were in there measuring him for a wheel chair. So that was fourth grade.”
By the end of middle school, bloated by steroid treatments, he couldn’t lift his arms anymore.
Two years ago, his breathing became compromised and is now in need of 100 percent respiratory assistance.
“Honestly I do, sometimes I get happy-sad I call it,” Mitchell Peterson said. “Where I’m happy to be alive but I just get sad that I’m struggling.”
Despite constantly facing adversity, he was able to graduate from high school, spent a semester in college and keeps a positive attitude.
“Everyone knows what I’m going through,” he said, “It makes me feel at home here. It makes me know that there is good in the world.”
There is some hope for the future.
Life expectancy for those with Duchenne muscular dystrophy has improved by nearly a decade since his diagnosis.
“There is progress,” Fletcher said. “There’s research being done in gene therapy and things like that, so there’s hope.”
That hope serves as motivation for the Peterson family.
“That (hope) is what keeps us going every day,” Steve Peterson said. “We don’t think about any of the darkness that could be out there. We think about, let’s keep working to find a cure. What may seem unattainable today, tomorrow could be very attainable and that’s what we have, we have hope for that.
Mitchell’s Run Thru Rockford will take place at 8:30 a.m. on Aug. 19.