Stephen Rysen was diagnosed with muscular dystrophy, (MD), at the age of five.
He would get tired easily, he wasn't able to ride his tricycle, he had trouble climbing stairs, and if became stuck in a box, he was unable to climb out.
Doctors told Rysen's parents that there was no guarantee he would reach adulthood.
That was in 1988.
"It is thanks to firefighters fundraising, also breakthroughs, is the reason why I am alive today," said Rysen, who defied the odds that were stacked against him.
Now the 42-year-old Maple Ridge man is giving back, and raising money to one day cure the disease and help others living with it, with the second annual Walk/Roll for Muscular Dystrophy Canada in his home town.
According to Muscular Dystrophy Canada, muscular dystrophies are a group of neuromuscular disorders which can also include: myopathies, neuromuscular junction disorders, peripheral neuropathies, and lower motor neuron disorders.
They cause the muscles to gradually weaken over time.
People diagnosed with a neuromuscular disorder may lose the ability to do things like: brushing their teeth, feeding themselves or climbing stairs.
Some people will lose the ability to walk or breathe on their own, the agency notes on their website.
"In some neuromuscular disorders, not only are the skeletal muscles affected, but also smooth muscles around intestines affecting digestion or swallowing. Muscles of the heart and diaphragm, which are important for breathing and circulation, are also affected," said the agency.
Rysen doesn't let the fact that he is confined to a wheelchair and needs a constant supply of oxygen, get in his way of achieving his goals.
He started the local run last year, which was attended by around 80 people, and hitting his goal of $15,000.
This year his goal is the same, but he is hoping to raise much more for the cause.
He came up with the idea for the local walk during the COVID-19 pandemic when he participated in a walk in another community and Maple Ridge firefighters surprised him with a cheque to support Rysen and his fundraising objective.
Captain Chris McKee with Maple Ridge Fire and Rescue noted Rysen has been a huge supporter of the fire department and an advocate for muscular Dystrophy.
He speaks to new recruits at the Justice Institute, not just Maple Ridge recruits, but recruits going through the firefighting program across the Lower Mainland, said McKee.
The department, added McKee, has known Rysen for 21 years.
"Just knowing Stephen for all these years. I can’t stress enough how big a supporter of the fire department he has been," said McKee, noting that supporting the walk is something the fire department is easily able to do in return.
Since 2008, Rysen has participated in multiple walks in support of Muscular Dystrophy Canada in communities like Vancouver and Burnaby, and he has raised more than $200,000.
This year will be his 19th walk.
"My goal is to raise money so they can have money for research breakthroughs and equipment for people," explained Rysen.
"We need more equipment because people with MD are living a bit longer than they used to,” he noted.
Rysen will be at the walk himself – to inspire others living with the disease about what is possible.
“The reason I do it, it gives purpose to life,” said Rysen.
McKee noted that firefighter across Canada have had a partnership with Muscular Dystrophy Canada for more than seven decades.
According to the society's website, more than 600 fire departments and associations across the country raise more than $3 million every year.
Since 1954, firefighters have raised almost $100 million, making a huge difference for the entire Canadian neuromuscular community, read the site.
Rysen is happy to do the run with his "hometown heroes", with a contingent of firefighters doing the walk along side him.
Rysen is the first client that has ever put on their own walk/roll event in Canada, and he is attributing his success to the Maple Ridge fire department.
The second annual Maple Ridge Walk/Roll for Muscular Dystrophy Canada will start at 11 a.m. on Saturday, June 21, in Maple Ridge Park, at the corner of 232 Street and 132 Avenue.
They will be set up just off the south parking lot off of 232 Street in the picnic area.
The event will take place on the paved path through the park along Fern Crescent and then back along the same path.
"Everyone is welcome to come, there is no registration," said Rysen.
To Donate to the cause or register as a participant to raise money, go to: https://muscle.akaraisin.com/ui/WalkRollMDC25/p/MapleRidge.
For more information about the event and Muscular Dystrophy Canada go to: https://muscle.ca/