It seemed to come out of nowhere. Only in retrospect, Andrew Sedmihradsky says, did the signs of his son's disease become clear. It started after Max (in cargo bike above) learned to walk. Andrew, along with his wife, Kerri, noticed their son would fall often—and hard. Still, being first-time parents, initially, they didn’t worry.
The falls didn’t stop, so the pair took Max to see a few different doctors. But when none of the professionals seemed too anxious about their son’s tumbles, the couple, who lived in Australia at the time, decided not to overthink the situation.
Then, in June of 2013, a daycare worker who had noticed Max’s lack of balance approached the family, insisting they bring the youngster to a doctor one more time. Soon after, Andrew took a few hours off work to bring his son in for an appointment with a pediatrician. Even that day, he felt unconcerned. We’ll get this over with, then do something fun for the rest of afternoon, he remembers thinking.
But after examining Max, the doctor quickly suggested the boy may have muscular dystrophy. The family was referred to a nearby hospital, and a few days later, a blood test confirmed the Andrew and Kerri’s worst fears: Max had Duchenne muscular dystrophy.
Duchenne is a life-limiting genetic disorder that causes muscle weakness because the body can’t make a protein called dystrophin. Duchenne weakens the legs and hips, and eventually the heart and breathing muscles.
“It was just devastating. It was impossible to sleep,” Andrew says “We had to listen to podcasts just to take our minds off of what was happening.” For a while the couple felt inert with shock, anxiety, grief. Finally, sick of feeling helpless, Andrew insisted the family get out and do something fun. They went to a museum in Melbourne. It felt good to get out of the house.
“All we’d done up to that point was wait” Andrew says. “Although it hadn’t been very long, I felt it was important to get up and fight this.”
Last year, since moving to Canada, the clan started Max’s Big Ride, a charity bike ride to raise money and awareness for Duchenne. All proceeds go to Jesse’s Journey, a registered organization committed to finding a cure for the disease.
For the past two summers, Andrew has steered a carrier bike (with Max—now five years old— in the front car, naturally) 600 km from Ottawa to their current hometown, Hamilton, Ont. Kerri, Andrew's parents and Max’s baby sister, Isla, have followed along in a van, delivering food and drinks, providing emotional support, and sorting out accommodations.
The family has also hosted Max’s Big Climb, a competition where professional cyclists collect sponsorship and race up a steep hill in Dundas, Ont.
Together, both events have garnered donations from places like France, Japan, the States and the U.K., and so far, the family has raised upwards of $100,000. They’ve also attracted the attention of a few prominent Canadians: recently, Max received a letter from Prime Minister Justin Trudeau, and this summer, he met with Toronto Mayor John Tory.
“It seems a bit surreal,” Andrew says. “Last year I created a website for Max’s Big Ride in my basement. I wasn’t sure if it would take off. And now the leader of our country knows about it.”
Andrew says the event was inspired by the bike rides the family used to take when they lived in Australia. Max loved sitting close to his father as he pedalled around. A long ride seemed like the perfect way to get attention for Duchenne, while providing ample time together. They keep each other company on the road, Andrew telling stories and Max talking about his hopes for the future (he says, for example, that he wants to start a band with his family).
On top of successfully raising money, Andrew says he’s found comfort and hope along the road. As they pass through cities, they’re regularly greeted by fire departments or groups of volunteers. Sometimes, they’re given food or other gifts—everyone wants to chip in. Most inspiring is when Andrew meets parents whose own children have muscular dystrophy. Often, he says, they insist on donating to Max’s ride.
Since the past two rides have been such positive experiences, Andrew says he hopes to do another next year to continue getting their message out. In particular, he hopes to get the attention of more politicians. As more experimental drugs become available, he says, families will need government support to cover costs.
While Andrew and Kerri are educating Canadians about Duchenne muscular dystrophy, they’ve yet to talk to Max about his disease.
Max knows his muscles are weaker than other kids,’ Andrew says, and that’s why he takes medication. But he hasn’t asked about an underlying cause.
They've decided to cross that bridge when they come to it. It’s an attitude Andrew tries to apply broadly while parenting a child with disabilities. “I try not to think about the worst-case scenerio, or fantasize about the best-case scenario,” he says.
He recommends that parents whose children have disabilities give themselves breaks, and that they reach out to others for support whenever possible. For him, the key to staying hopeful while continuing to address the difficult realities is to take things one day at a time. “I try to focus on the here and now, because that’s what I have the power to change.”
I think that there’s hope,” he says. “I wouldn't be doing this if there wasn’t.”
Follow Max's family on their blog.