It’s a typical rainy Sunday in the Hamelin household.
The younger of the blended family’s six children run boisterously around the South Surrey split-level home, pretend sword-fighting and leaping from furniture, landing with a crash on the carpeted floor. The older boys lounge lethargically, glued to their smart phones, baseball caps pulled down almost to their noses.
Cindy – mom in a family of five boys and one girl, aged two to 19 – navigates around the home’s tight corners and though narrow doorways with a motorized wheelchair, coming to a stop near a brown leather couch in the living room; her husband, Tyler, helps her from the wheelchair to a spot on the couch.
Three short months ago, Cindy was enjoying the remnants of a hot, sunny summer, having water fights in the backyard and jumping through sprinklers with her children.
Last month, the 38-year-old was diagnosed with ALS, a progressive neuromuscular disease – also known as Lou Gehrig’s disease – for which there is no cure.
Cindy first noticed mild symptoms in February, when she experienced weakness in her left hand. Thinking it would go away, she put it out of her mind for months, until September, when she started inexplicably falling. Her family doctor referred her to a neurologist, Dr. Gurwant Singh, who ordered an MRI to check for tumours. When the scans came back clear, he told Cindy her symptoms pointed towards ALS.
“I knew, from the beginning,” Cindy told Peace Arch News earlier this month. “When I saw Dr. Singh, when he told me what he thought it was, the look in his eyes.
“I didn’t know what ALS was, I thought maybe it was like MS. They wouldn’t really give me any details, and when I went back to the truck, I Googled ALS. I was just shocked and just horrified for my children.”
On Nov. 12, the diagnosis was confirmed.
Amyotrophic lateral sclerosis is a neuromuscular disease in which nerve cells die and leave voluntary muscles paralyzed. It can affect anyone regardless of age, gender and ethnicity, and early symptoms include difficulty walking, weakness in hands and legs, slurred speech or muscle cramps and twitching.
According to ALS Canada, approximately 2,500-3,000 Canadians are living with ALS; the average lifespan after diagnosis is two to five years.
The disease was cast into the spotlight in the summer of 2014 with the ALS Ice Bucket Challenge – a social-media campaign that saw millions of people around the world dump buckets of ice water over their heads, pledging to donate and challenging others to do the same.
Cindy watched videos of people taking part – including her own nieces – never knowing what an effect the campaign, which raised $17 million for ALS Canada, would have for her.
“I’m so thankful for the ice-bucket challenge,” Cindy said, noting the donations made it possible for ALS Canada to provide her with the motorized wheelchair at no cost.
“Before the ice-bucket challenge, families would have to pay for things like wheelchairs and other equipment themselves. They would go bankrupt.”
While Cindy is grateful for the emotional support and comfort provisions she’s received from ALS Canada, she knows there is little it can do to help her fight the relentless disease.
Determined to do everything she can, Cindy has researched options for treatment and medication. She came in contact with a man in Burnaby who underwent a stem-cell transplant following his ALS diagnosis, and said his symptoms have noticeably slowed down since.
Cindy and her family and friends are now selling ‘Kick My ALS’ T-shirts online, with half the proceeds going towards ALS Canada and the other half to help fund her own treatment. A fundraiser held last weekend at Sawbuck’s Pub raised close to $5,000, an amount that left Cindy “in awe” of the level of support she and her family have received since her diagnosis.
She also found a medication – which is not yet approved by the FDA – that in early clinical trials has shown promising results.
Under the federal government’s Special Access Program, Cindy can import the drug, however she needs a physician to facilitate and has yet to find one willing to do so.
“Even if there’s a one per cent chance that it could help, I’m willing to try it,” she said. “So I’m on the hunt to find a doctor that’s willing to import and administer it.”
In the meantime, the family is striving to make the best of their time together. Tyler is currently on a leave of absence from his job in fire protection, though he will have to return soon.
“I obviously can’t stay off work forever,” he said. “So we’re thinking about getting a nanny to live here so there’s somebody here all the time.”
Cindy’s wish for the coming weeks and months is to spend as much time as she can with her children. She has started filming videos for them to mark milestones in their lives that she knows she won’t be there for – graduation, weddings, the births of their own children.
“It’s like everything is going in slow motion right now,” she said. “I’m noticing all these little things that my kids are doing that I never noticed before.”
She’s been told by doctors her symptoms are progressing faster than most, so she is preparing for the worst.
“This could be my last Christmas with the children.”
In addition to gathering fundraising support for a stem-cell transplant – she’s hoping to schedule the procedure within the next few weeks – Cindy is hoping her story will help bring more awareness to this “horrific” disease.
“The more people that are aware of it, the more likely there are to be clinical trials, and the faster they can have a treatment or cure,” she said.
“I know that the cure won’t be in my lifetime, but if I can somehow help to get this information out there faster, then it’s all worthwhile.”
To find out more about Cindy and her fundraising efforts, visit www.cindyjoy1.wix.com/kickmyals