‘Every day we’re hoping there’s a cure’
Christopher Mino might be small for his age, but the 13-year-old St. Catharines boy is coping amazingly well.
Most children with Duchenne muscular dystrophy are in wheelchairs by the time they’re his age. Christopher, for the most part, is still running around and playing with his friends, nine years after his parents were given the terrible diagnosis.
He’s also a bright youngster, acing most of his classes at St. Ann Catholic School in Port Dalhousie, his father Brian says.
“We’re pretty lucky with how everything is going,” he says. “Everything ’s going very well — better than we could have anticipated.”
Brian attributes his son’s health to a drug that is typically not available in Canada called deflazacort.
Although it’s often prescribed to children with Duchenne, deflazacort has yet to be approved in Canada and patients must apply to Health Canada’s Special Access Program for access to the drug.
Christopher’s parents pay a few hundred dollars every three months to import the drug — a steroid similar to prednisone — imported from France.
“It’s a small price to pay,” Brian says.
“It’s a steroid so it builds up the muscle, and it kind of delays puberty. When you’re 13 or 14 years old, that’s when your muscles are growing the most. So it delays that. It keeps them small and delays puberty.”
As a result, he says, Christopher is currently about the size of a sixyear-old, despite being more than twice that age.
The drug also relieves pressure on Christopher’s muscles as he’s growing, allowing him to stave off the effects of the degenerative disease. But it’s not a cure. A cure is something Kristine Ashford-Hancock continues to hope for, for the sake of her sixyear-old grandson Nolan.
“I’m hoping that they find a cure, because they keep telling us that the research is going gangbusters,” she says.
Nolan was diagnosed with Duchenne muscular dystrophy in July 2014.
“It was heartbreaking,” his grandmother says.
“The day we were told, everything changes. Your whole world is turned upside down, and this little person that you love more than life itself won’t live to be an old man — not so far.”
There’s no way to predict how quickly the disease will progress, she says, or how long the child will live.
The helplessness she felt inspired Kristine to do something in any small way she could towards making her dreams of a cure a reality.
When Nolan was first diagnosed there was a small Muscular Dystrophy Association walk in Niagara, held to raise funds to assist local families coping with the disease as well as to support research projects working on treatments for the disease.
Kristine soon got involved, promoting the fundraising event. In the years since, she says, participation has tripled.
“Last year, I think we had 350 people.”
Her involvement earned her the local 2016 outstanding volunteer award.
“It was the first time they’ve ever given the award, and they gave it to me,” she says.
Kristine will again have Nolan in mind on Saturday when she joins hundreds of others at the Grantham Lions Club at the north end of Niagara Street in St. Catharines for the annual Niagara Region Walk for Muscular Dystrophy. Registration for the walk starts at 10 a.m., and the walk begins an hour later on one- and five-kilometre routes.
Kristine says funds raised during the walk are used to assist families throughout Niagara.
She says 42 per cent of the money raised during the walks is used to provide assistive devices.
In the years since Christopher’s diagnosis, his parents have come to appreciate the cost of those devices, and the impact purchasing them can have on families.
Despite Christopher’s health, he is starting to show symptoms of the disease. He tires easily.
“His muscles do get sore after a while. He does run around with his friends a little bit, but not too much,” Brian says. “Even climbing stairs can get difficult after a while.”
At night, Christopher wears leg braces to keep his ankles flexed to help prevent deterioration of his leg muscles. Those leg braces need to be changed annually, and it costs of about $2,500 each time.
Brian has extended health insurance that covers much of the cost for the braces, “but for other families that don’t have benefits, it’s obviously very taxing on them,” he says.
That’s one reason the fundraising walk is so important in the community, “to provide equipment and resources for other children.”
It also helps families with travel expenses to medical appointments in Toronto and other large urban areas where specialists are located.
“That’s what the walk’s all about. To help out other unfortunate children in anyway they can,” Brian says.
But it’s research that will ultimately make the difference for children like Christopher and Nolan. And a significant portion of the funds raised during the Niagara Region Walk for Muscular Dystrophy is dedicated to research.
Kristine recently attended a Ontario firefighter convention in Toronto, that included presentation’s on the disease that has been adopted as the top charity for firefighters across the country.
“We had research scientists as guest speakers, and they were saying, ‘We are so close, so close to finding how to deal with this,’” she recalls.
She says scientists have found a connection between Duchenne muscular dystrophy and stem cells, “which is amazing because there’s so much money going into stem cell research.”
But for now, she’s doing everything she can in the hope that her grandson “won’t have to go through this.”
Christopher’s family, too, is praying for that cure to ensure that he will go on to high school, likely at St. Francis, eventually find a job and ultimately lead a normal life.
“Every day we’re hoping there’s a cure or something that will delay the inevitable.”
His family is pitching in substantially to make that happen. So far this year the Mino family has raised $13,630 towards the walk’s overall goal of $35,000.
“We get a great deal of support through the network, from my work, my wife’s work, family from Sarnia, my hockey buddies, my golf buddies, people at my son’s school,” Brian says.
St. Ann school is also extremely supportive of Christopher, running a fundraising event called The Move it for Mino Campaign.
“Each student can buy paper shoes for $5, and they line the hallways. I think last year they raised over $1,000 doing that.”