It’s impossible for me to stroll through the halls of my school without being noticed. I don’t walk like other kids do. I kind of shuffle along on the tips of my toes. But at least I can get around on my own.
The summer I turned 22 months, I stopped walking – just like that. I’ve been told that’s when I caught a nasty virus the doctors call acute disseminated encephalomyelitis (ADEM), which caused the lining around my brain to swell. That left me with spastic diplegia, which basically means my legs are super stiff, and I don’t have a particularly good sense of balance or endurance when I walk. It’s like my brain is sending out the wrong signals to my legs.
Luckily, a team of physiotherapists at Le Bouclier, a rehabilitation centre in the Laurentians, were quick to take on my case, along with a physiatrist at the Marie Enfant Rehabilitation Centre at Sainte-Justine.
After several appointments, the specialists at Sainte-Justine recommended a neurosurgical procedure known as a rhizotomy, which involved cutting some of the nerves in my back to loosen up the stiffness in my legs.
The operating team at Sainte-Justine took great care of me. I felt like they were all there to help. They explained everything carefully to me and my family, including the risks and the benefits. I was in the hospital for about a week, and I don’t remember much of anything, except that I was in really good hands.
The operation itself lasted close to eight hours. I couldn’t walk afterwards. I had to relearn how to move and work at it every day, despite the pain I felt in my body and the new sensation it created in my legs. The nurses were there to cheer me on, along with the other kids in the ward. They provided our parents with support, too. It gave me the motivation I needed to push myself forward.
When I realized I’d have to be able to walk before they’d let me out of the hospital, I worked hard to be able to stand on my own two feet, even though 50% of the nerves that sent signals between my brain and my legs had been severed.
I went through over a year of intensive rehab so I could improve my gait pattern. And although it’s not what you would call perfect, it’s good enough to let me live a normal life.
I am very happy with the results and very grateful to Sainte-Justine. After I had the operation, I could hold my newborn cousin in my arms without falling down.
That might seem a little silly to you, but for me it changed everything. I could never have done that without my surgery, the hard work of everyone at Sainte-Justine and your support.
My physiatrist has recommended another procedure to lengthen my hamstrings to stop me from walking on the tip of my toes and maybe even improve my overall condition.
In the meantime, I am proud to do my part to give back to Sainte-Justine. This year, I was asked to be an ambassador for the Sainte-Justine Private Schools Youth Challenge for my school, Externat Sacré-Coeur. My classmates and I raised over $40,000 this fall for Sainte-Justine so children can have access to the best possible level of care.
If I’ve learned anything from this ordeal, it’s that everyone is different – and that you have to work your way through each difference and, most of all, never give up!