It started when Levi Barron's right hand curled into a claw shortly after his 13th birthday.
Always laid-back, he told his mom that he'd just learn to write with the other hand and not to worry.
'I remember just being so frightened and upset that I didn't know that kids got MS.'— Karen Barron
But the debilitating stiffness crept to his other hand, and soon the athletic hockey player was having trouble walking and even fell a few times.
It took four doctors and a stint in hospital, paralyzed from the waist down and so dizzy he couldn't open his eyes without vomiting, for Levi to finally get a diagnosis of multiple sclerosis.
"I remember just being so frightened and upset that I didn't know that kids got MS," says Karen Barron, Levi's mom.
Once thought of as a young adult disease striking people in their 20s or 30s, it is increasingly being recognized that multiple sclerosis can actually emerge much earlier, says Jon Temme, vice-president of client services and research for the Multiple Sclerosis Society of Canada.
"Certainly the likelihood of a child being diagnosed accurately is much greater now than it would have been a decade ago."
Dr. Brenda Banwell, who runs the country's only pediatric MS clinic in Toronto, says it's not new that children get MS. But she says that more sophisticated medical imaging combined with research into a condition called acute disseminated encephalomyelitis (ADEM) has made it a much more common diagnosis over the past decade.
The disease has now been recognized in children as young as toddlers, and is fairly frequently diagnosed in children under the age of 10, says Temme. Most commonly, though, it emerges in puberty and beyond, leaving teens to cope with a chronic disease with varied and debilitating symptoms.
The disease attacks the protective myelin that covers the brain and spinal cord, causing inflammation that can lead to extreme fatigue, vision problems, memory difficulty, and even paralysis.
Levi's case was exceptionally severe. Traditional treatments didn't stem the frequent relapses that left him in a wheelchair and hospitalized for months on end. Lesions in his brain left him feeling boiling hot despite a normal body temperature.
It took a series of chemotherapy treatments to shock him out of the constant attacks his body had launched on itself.

Coming to grips with diagnosis

"That whole period of time was just so — I don't even know how to explain it. Just so terrifying and so full of uncertainty because [with] MS, you don't know," says Barron.
It's hard for teens to come to grips with the diagnosis of a chronic disease, says Jennifer Thannhauser, who helps run a support group in Calgary and was herself diagnosed with MS at the age of 12. At that time, she was the youngest person ever diagnosed in Saskatchewan, and found herself thrust into support groups with people over the age of 40 who bore no resemblance to her reality.
"I felt like the only one around who knew anything about it or had to experience it."
Thannhauser, who is doing her PhD in counselling psychology working with teens with MS, says teens don't want to feel different from their peers.
"It's wanting to feel normal and wanting to fit in with a group. And so having MS for a teenager can challenge that sense of being normal."
Ten years ago, no clinical research across Canada focused on the childhood occurrence of MS, says Temme. Now, several large-scale projects are being conducted through a research network that spans the country, something that puts Canada at the forefront of pediatric MS research around the globe.

Identifying trigger

Studies on young people with MS hold great promise in helping to discover what causes MS, something that has so far proven elusive. Since children have experienced fewer things than adults, it's a lot easier to figure out what viruses or environmental exposures could be relevant.
"One of the things about children is they have the onset of their disease so close to what we think is the beginning. So looking for triggers or targets that start the disease process is a particularly appropriate thing to do in pediatrics," says Banwell.
"Excitingly, if you find something that's present very early, the big push would be, is it something we could modify and therefore either reduce the risk of MS in other people, or alter the course of the disease by picking up on a particular trigger early on."
After recognizing the need over the last decade, the MS society began focusing more of its energy on funding programs for children and teens. For the last two years, youths have been able to attend a summer camp in Ontario, providing what is for some the first chance to connect with others with the disease, says Temme.
Levi is now 16, and bears very little resemblance to the sickly boy who couldn't stir from his hospital bed. Outside his house, his wheelchair lift now sits abandoned, covered in snow.
After treatment began to work, he had to relearn how to walk because he'd lost all sensation in his legs.
"I just can't feel my legs that much from my knee down. Temperature's a problem. Pretty much in my feet I can only feel pain if I'm going to feel temperature, if it's too hot or it's too cold, it's all I can feel," he says.
While he attends the support group and also went to the first year of the MS camp, Levi says he and other kids with MS don't really discuss its impact on their lives when they get together.