The 10-year-old boy pretty much stopped growing in Grade 1. Ever since he was four years old, he has been given steroid pills daily. Still in clinical trials, the drug is granted to him by special access through the province. One of the side effects is that it stunts growth.
He’s about the size of his six-year-old sister. Some 3 feet, eight inches tall.
And for as long as he’s on the drug, he won’t grow measurably.
But the tradeoff is straightforward. A non-issue really, for any parent whose heart belongs to their children.
He will live longer.
His father, 38-year-old Brian Mino, puts it like this: “Yeah, he’s small, but we have him.”
And so far, it seems to be working.
Ten-year-old Christopher Mino has Muscular Dystrophy. And the worst kind at that — Duchenne Muscular Dystrophy.
It’s an inherited disorder that affects mostly boys. As they get older, their muscles get weaker.
The unknown does not scare his parents. Indeed, they welcome it. Are comforted by it.
It’s the knowns that are at times too unbearable to consider.
And this is what they know: By the time boys are 10 or 12 years old, they will usually need a wheelchair. Loss of movement, will turn into paralysis. They will lose the ability to speak. And then, their heart and lung muscles too weak to sustain life, they will die. Usually, somewhere between 20 and 25 years old.
Yet, Christopher’s parents, Brian and Laura Mino, feel lucky. Their son was diagnosed early, at age four. And as a result, he started talking the steroid drug, Deflazacort, early too.
The medication has been shown to improve muscle strength, then slow down the progression of the disease. And the side effect of suppressing growth has benefits too since with Duchenne Muscular Dystrophy the muscles weaken during growth spurts.
The drug does not change the outcome of the disorder. It only delays the inevitable.
“We focus on the day to day,” says Laura. “The future will be what it will be.
“It’s about living day by day.
“We don’t know the future, so we don’t think about the future.”
* * * * * * *
One Tuesday in 2007, a day after Christopher had some bloodwork, they were eating lunch together when the doctor called.
Brian remembers it was a Tuesday. It reminded him of a line in the Baz Luhrmann spoken song, Everybody’s Free.
Don’t worry about the future; or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubblegum.
The real troubles in your life are apt to be things that never crossed your worried mind; the kind that blindside you at 4 p.m. on some idle Tuesday.
And so, it was a Tuesday. An idle Tuesday, until they were blindsided by the phone call from their doctor who told them something was seriously wrong with their son’s blood test.
It was March 2008, after more tests, and finally, a muscle biopsy, when they received the diagnosis.
“Emotionally, we didn’t know what hit us,” says Brian.
“Six months earlier, we had the million dollar family. We had a healthy son, a healthy daughter and within six months our whole life had changed.”
At the time, the family was living in northern Ontario, in Kapuskasing. But in 2010, they moved to St. Catharines to be closer to the doctors and medical facilities.
Christopher takes Deflazacort, the steroid drug, through special access. In simple terms, his family had to apply to the province to receive it through the Holland-Bloorview Kids Rehab Centre in Toronto, where he’s followed by a neuromuscular team.
The drug is not paid for by the province, something Muscular Dystrophy Canada is hoping to change, says Stacey Lintern, executive director for Ontario and Nunavut.
While there are other steroid drugs, this one has less side effects, she says.
Steroid drugs like this are giving families hope, says Lintern. It’s slowing the progression of the disease and boys are living longer — into their mid-30s. They walk for longer, don’t lose the use of their arms until later, and are older when they start having heart and respiratory problems.
“People are aging,” she says.
Every year, Christopher’s heart and kidneys are checked and he has a bone density scan.
His parents know he will not get better. Yet, it’s at these appointments, where a precarious balance of hope and reality mingle.
“You know he won’t get better,” says Brian, “but you just hope he’s not getting worse.”
And there have been setbacks.
At one appointment, Christopher was not able to bend his ankle as much as at the appointment before. At night, he wears leg braces to keep his feet flexed.
“Days like that are hard,” says Brian.
“As a family, everyone is hoping things will never get worse, but when you see signs, you think it’s the beginning of him not being able to walk.”
“That the disease is progressing,” says Laura.
“You break down at night when things are quiet. You break down and let it all out sometimes,” says Brian.
“Just wishing you could do something.”
* * * * * * *
In fact, they are doing something.
Christopher’s school, St. Ann, is once again organizing the Move it for Mino fundraiser. And on Saturday, May 10, Team Christopher will participate in the Niagara Region Walk for Muscular Dystrophy at Lakeside Park.
Family, friends and coworkers from Meridian Credit Union where Laura works in payroll and Black and McDonald in Stoney Creek where Brian is an accountant, will lend their support too.
At school, Christopher gets help with writing because his finger muscles are easily tired. And he has friends who carry his backpack up and downstairs. So far, Christopher can manage the stairs himself.
He gets tired if he runs around too much. Yet with his close friends, he’ll play cops and robbers. He takes swimming lessons, drum lessons, and used to do tae kwon but even that’s too much of a strain. He needs to be pushed in a stroller on walks, or even when the family goes to the mall. He can build a mean Death Star in Lego pieces, and generally likes any video game if it involves his friends.
And, he’s a pretty happy kid.
As his dad explained how Christopher takes steroid drugs, the youngster quipped response: “Rats, it means I can’t go to the Olympics.”
Dad can only smile.
“We just try to do the best we can for our son,” he says.
“All of a sudden it came to the point where nothing else mattered. It didn’t matter if he’d play hockey. It didn’t if he was going to be a successful businessman.
“It was just a matter of trying to keep him alive and trying to keep him walking as long as we could.”
By Cheryl Clock,