‘We seize every moment’: Family shares son’s journey with Duchenne muscular dystrophy

A Canmore family says it is making every moment count with six-year-old son, Ollie, who lives with Duchenne muscular dystrophy.

A Canmore family is making every moment count with their six-year-old son, Oliver (Ollie) Masnada, who has been diagnosed with Duchenne muscular dystrophy—a progressive genetic disorder with no cure.

The disease causes progressive muscle weakness, loss of mobility and a shortened life expectancy due to the body’s inability to produce dystrophin—a protein essential for strong muscles.

For Ollie’s parents, Duchenne Muscular Dystrophy Awareness Month is a chance to share their story, focusing on the urgency of access to treatment and giving their little boy as much joy and freedom as possible.

Life with Ollie

“We know our time with him like this is limited, so we seize every moment,” said Ollie’s mother, Nikol Faltysova.

“Ollie just loves fishing, skiing, biking and being outdoors and playing with his little sister, Nella.

“We live in the mountains, so being here with him just brings us so much joy.”

His father, Dylan Masnada, describes Ollie as “always curious,” adding that he “loves camping, just playing in nature surrounded by trees, bugs and lifting rocks wherever he can find them.

“He loves building stuff just like a little boy,” Dylan said.

But when Ollie was just three years old, the family’s world shifted when they noticed their little boy tripping and falling while trying to complete basic tasks.

Dylan says it came as a complete shock.

“He had a little fall on his head, so we brought him to the hospital just to be careful, but then they ran tests, and then they found some weird numbers that were abnormal for his liver. One thing led to another, and then we had the diagnosis,” he said.

“At first, we took care of the barriers of denial, because it’s not in the family, and it is a genetic disease, but after it did get confirmed, we basically were hit by this new reality.”

Despite the devastation, Ollie’s parents say he is in his “golden years.”

“We are just trying to get as much life, as much experience and as much memories as we can get in right now because once he starts using a wheelchair, things are going to get harder and harder,” Nikol said.

“Right now is not the time to grieve or to be sorry about his condition. Right now he still can walk, he still can somewhat run, so because of that, we decided to push the grief to later and just try to enjoy the moment,” Dylan said.

The fight for treatment

Duchenne muscular dystrophy affects roughly one in 5,000 male births, with about 800 boys and young men diagnosed each year across Canada.

“It’s not rare,” said Dr. Jean Mah, a child neurologist at the Alberta Children’s Hospital.

Mah says the disease is relentless and only found in boys because of a defect or change in the genetic code of their X chromosome.

“Over time, the muscle breaks down and is unable to repair itself and is accompanied by scar tissue, fatty replacement and then loss of bodily function entirely,” she said.

“These individuals have a very difficult disease course, and it shortens their life expectancy.”

Symptoms typically appear between ages two and four, with most boys losing the ability to walk in their teenage years, and life expectancy can range from the 20s to mid-30s and, in some cases, the early 40s.

Currently, no approved therapies exist in Canada, but Mah says some treatments, including the use of corticosteroids, have been helpful in slowing down the disease.

“We are really hoping that there will be more effective treatment for Duchenne in months and years to come,” Mah said.

“Raising awareness means that families know that we are working together, providing that information in the community so that this is not something that they have to face alone.”

In the meantime, Nikol says she’s doing everything she can to gain access to treatments outside of Canada.

“It’s so critical to get him on this treatment while he’s mobile, because if we miss this window, he’s already going to be in a wheelchair, and there’s no coming back from that,” she said.

“Some treatments in Canada will be there to slow down the process of the disease, which is important, but nothing is definitive or available here,” Dylan said.

Finding strength and hope

For Ollie and his family, strength comes from facing the disease head-on and spending their spare time fundraising for Duchenne muscular dystrophy research and awareness.

Recently, the family also started a “Recycle for Hope” campaign in Canmore.

The local bottle drive aimed to raise funds to get power assist for his manual wheelchair, a mobility scooter and other essential outdoor equipment that can aid in keeping Ollie active outdoors.

“Your life gets crushed,” Nikol said, holding back tears.

“Everything that you’ve imagined for yourself goes away from you, and you just need to find purpose and different perspective. You have to mourn all the losses that you lost at that time, but you have to stay strong.”

Dylan says continued awareness is also essential to carrying on with a positive life.

“What we’ve been trying to do in our community and across social media is to make people understand that it is a disease. There is a path to find a cure for that, and it’s not a dream that we can’t achieve,” he said.

Their message to other families is one of resilience.

“Live every moment like it’s the last,” Nikol said.

“Once you have a child who has a terrible disease and you know that your time with them is limited, it really hits you. The need to create the joy—it’s the fuel. It’s what keeps us going.”