Debilitating disorder
Walk for Muscular Dystrophy June 9 raises awareness and funds to find treatments and cure
Frustrating, annoying and hard are all words used to describe living with muscular dystrophy.
“It’s different for everyone. Some carry a diagnosis in their genes, while others will be diagnosed without it being passed down from mother or father,” said Michelle Moore, one of the organizers for the Walk for Muscular Dystrophy 2018 that is taking place in Summerside in June.
Kids like Dakota Gallant and Aden Moore, who were diagnosed with Friedreich’s ataxia, didn’t receive the genes from a parent. Rather their parents noticed symptoms and traits and took them to the doctor.
“After you go to the doctor, then you’re sent to a pediatrician and then to the IWK and things get figured out,” explained Michelle about her son’s diagnosis.
Friedreich’s ataxia is a rare, often inherited disease, that causes nervous system damage and movement problems, usually beginning in childhood and leading to impaired muscle coordination over time.
In other cases, like Hailey and Braeden Ahern, muscular dystrophy runs in the family, with their father and grandfather both carrying a diagnosis.
“We have CMT – Charcot-Marie-Tooth disease,” explained 16-year-old Braeden.
Hailey added, “We were tested young because it runs in our family. It’s limited things we can and can’t do. It’s frustrating.”
CMT is neurological disorder that causes damage to the peripheral nerves, which carry signals from the brain and spinal cord to the muscles. Peripheral nerves are also responsible for relaying sensations like pain and touch to the brain and the rest of the body. CMT often causes muscle weakness and atrophy and some loss of sensation in the forearms, hands, lower legs and feet.
For people with a muscular dystrophy diagnosis, it can take longer to do day-to-day things as well as take a toll on energy levels.
“Halloween is really hard. My friends often want to be out for four or five hours, but I can barely do one because it takes a lot out of me,” said Hailey.
Hailey and 10-year-old Dakota both wear ankle braces for support.
Braeden added, “I try to be as active as I can. I play baseball. But once you’re out there for a bit, you really start to feel it.”
Jeff Poirier, a 35-year-old man, has lived with a Friedreich’s ataxia diagnosis since he was 16. By the time he was 18, he had to use a wheelchair.
“When I was in high school and everyone was talking with their friends in between periods, I was too busy trying to walk to my next class.”
Now married, Poirier tries to live as normal a life as possible.
“I try to get out of the house as much as I can, and I go to physio once a week. I’m trying to get back to going to the gym; it helps me physically and mentally. I try to be happy and
positive.”
In past years, Poirier has acted as an Island ambassador for muscular dystrophy.
This year he’s looking forward to taking part in the Summerside walk, along with the Aherns, the Moores, Dakota and others.
Hailey adds, “My friends are participating in the walk this year. So, it’s really special. It’s really cool that they’ve come to understand this part of my life.”
The Walk for Muscular Dystrophy 2018 will be held at the Summerside Boardwalk, starting at the gazebo near the Green’s Shore sign across from Sunny’s Dairy Bar. The route will go from the gazebo, to the bridge leading onto MacKenzie Drive and back.