By Terrence Bishundayal
At the age of six I began losing my childhood.
In 2002, my family came from Guyana to Canada. I started first grade at North Kipling Junior Middle School. Immediately after, I noticed that I had trouble climbing the stairs. I would lose my balance and fall. My teacher suggested I walk on the opposite side of the stairs, while the class walked on the right, so I could take my time.
My legs hurt when walking long distances and I would ask to be lifted. I didn’t realize it at that age, but my muscles were getting stiff. Sometimes when I was walking I would trip.
In gym class, I couldn’t keep up with the other kids doing sports. My gym teacher told my parents she thought my shoes were too big. At the time, none of us thought it was anything serious.
By the end of Grade 1, I was using the elevator.
My dad took me to the doctor and he ran tests and referred me to SickKids. I had surgery which determined that I had Duchenne muscular dystrophy (DMD). This is the continuous weakening of all of the body’s muscles over time.
To be honest, as a kid, I didn’t really understand it.
By the spring of 2003, I was using a manual wheelchair. This confused the other students. “What’s with the chair?” they’d ask. “I’ve seen you up before.” They weren’t mean, but more curious.
The same thing happened when I was given easier things to do in gym class. If we were playing basketball, a hoop was put on the floor and if I got the ball in the hoop, that counted as a goal for my team. The students wanted to know why that just applied to me.
“I have a leg problem,” was my response. That was all I knew about DMD at the time.
In Grade 3, I was prescribed Deflazacort, which is a steroid medication taken by patients with DMD. My parents told me “If you take these pills, your muscles will be better.” I thought that meant I’d be like the other boys. But while they were getting stronger and able to do more physical activities, my strength faded away.
I was living with my cousins at the time, and one day we noticed that they were all growing taller and I wasn’t. It was the first time I noticed I was shorter than other kids. I didn’t know Deflazacort would affect my growth, and I wanted to be tall like the others. I was clearly upset about this and I became more emotional and sensitive.
The school had a large playground outside but I couldn’t play during recess. My wheelchair was hard to push over grass and a couple of times I flipped over. Many times I’d just sit by the door so when the bell rang I could get back to class quickly. In the winter, my wheelchair could get stuck in the snow or slide on ice.
In Grade 4, the teacher picked other students to help me at recess. She would assign one boy and one girl. I wanted to hang out with the guys, but often the boy assigned to me would say ‘I’m going over here to play basketball,’ or would just throw me off to the girl.
Then my homework started to pile up. My hands got sore when writing, and I couldn’t work at the same speed. I’d often do homework from 4:30 to 9:30 at night, and sometimes I still had to get up early the next morning to finish it. I didn’t know how to tell my teacher what was happening. I was the kind of student who didn’t want to show up at school with incomplete work.
Eventually I got frustrated and cried, and my mom called the teacher. After that my homework was reduced. For example, instead of 30 math questions, I’d do 15, or instead of a full page of journal writing, I’d do half a page.
Students started to tease me. I was gaining weight because I wasn’t getting as much exercise in my wheelchair. Nobody had told me anything about wheelchair sports. They called me fat and an emotional wreck.
Kids can be mean, and they didn’t understand what was happening to me. I did report it to the teacher when I thought a student was going too far, but it involved many students.
In Grade 5, the teachers began planning a three-day trip to Ottawa. I was excited to go, and it never occurred to me that I wouldn’t be able to. But I had to stay home because they didn’t have knowledge about how to do my personal care, and my mom was working. I was very upset about that.
If I was talking to a younger student with DMD now, I’d say to always report teasing to your teacher, no matter how small, because it can get worse if you don’t.
When you feel down or sad, it’s best to talk it over with an older adult who you trust. It might not be your parents, because they may be working, or you may be scared to tell them. When I tried to talk to other classmates about what I was going through, they didn’t understand. Their greatest worry was what they were going to do at recess, or getting a snack.
I was a patient at Holland Bloorview, and sometimes I was invited to attend events with other kids with DMD. But I didn’t want to take part in any of that. I didn’t want to talk about the pain I was feeling, and I didn’t want to look at someone older and to think “this is what will happen to me.” It’s kind of ironic, but I was scared of people with disabilities, because everyone was able-bodied at my school. I was the only one who was different.
My elementary years weren’t all bad, but many times I didn’t feel good. It was hard to have a disability when the other 800 children didn’t. Whenever I felt angry or sad, I would try to get back to a calmer mood. I never had any counselling. No one ever told me if you feel angry, there are things you can do, like listening to music.
Growing up I thought of myself as a storyteller, whether telling real stories or fictional ones. I was very big on movies, and I wanted to learn how to review them. I’ve just finished my second year in journalism at Humber College, and I’m learning how to tell stories in many different ways.
By Megan Jones
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.
By Louise Kinross
Yesterday I heard a fabulous podcast on The New Family, a Canadian blog by Brandie Weikle that shares unique stories about all the different ways a family can come together and live.
The New Family has dug up some incredible stories that include raising children with disabilities.
Yesterday's podcast Seizing The Day With Your Family was about one dad's pursuit of world travel when he learned his son's degenerative condition meant he would lose skills over time.
That dad is David Knapp-Fisher of Victoria, B.C.
When David learned his son Tristan had Duchenne muscular dystrophy, he vowed to take him around the world before Tristan lost the ability to walk, which doctors predicted would happen in five years.
Coming up with the money was no small feat, and included moving with his wife and son into a 400-square foot bachelor apartment to save on rent and eating lots of Kraft dinner.
When Tristan was eight the family had saved enough to go on a month-long whirlwind to Europe, visiting seven countries. One of the most beautiful anecdotes David tells is getting to the Notre Dame Cathedral in Paris and realizing there was no elevator! He carried Tristan, on his shoulders, up 387 steps so he could see the gargoyles at the top.
Two weeks after returning home, Tristan had a fall and never walked again.
David says he's made "amazing life experiences" his family's top priority over material things.
This interview certainly gave me a lot to think about, and act upon.
Learn more about David's story in this Ted Talk.
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