When I became a mother, my world was transformed entirely: suddenly, my top priority became the wellbeing of my children, not my own. I was – and still am – totally in love with my family: they are the love of my life.
In May 2008, I gave birth to Anakin. I hesitated a long while before deciding on his name. I liked the soft tone of the name Yoan, but Anakin was the name that kept forcing itself into my mind…
From an early age, it was clear that something wrong with Anakin; he showed severe mobility-related difficulties, had a hard time climbing stairs and running, etc. “He won’t be a great athlete, but don’t worry,” our doctor said.
Despite the good doctor’s reassuring words, I felt something in the pit of my stomach; I couldn’t help feeling that an imminent threat was just around the corner. A mother is always afraid for her child, isn’t she? I tried to keep calm by telling myself that I was a mother-hen and that I was the worrying type…
Over time, new signs appeared, such as Anakin’s calf muscles becoming very hard and swollen. The term “muscular dystrophy” then began to emerge from the mouths of our specialists. My internet searches had me petrified; I thought it impossible for this to be happening to our family.
The diagnosis finally came in October 2013: Duchenne muscular dystrophy. A shocking reality that can annihilate you as a parent. However, in the abyss of life’s great sorrows and trials, one can always decide to take a favourable view of things.
But where can one find the positive side of things when the announced fate is a progressive degeneration of all muscles (including the heart), loss of mobility and, ultimately, a life of being tied to a wheelchair fighting for your next breath?
The positive in this is La Force DMD; the positive resides in our decision to become actors rather than spectators in this tragedy; it lies in our choosing to act and to have hope. Great scientific advancements are currently being made in the field of genetics: promising research is on the verge of providing new treatment, and more importantly, some researchers need financing so that these new methods of treatments can become a reality. There’s also the fact that certain forms of treatment have been approved elsewhere but are not currently available for our children in Canada. In Canada, the drug approval process is a long and challenging journey ridden with obstacles, during which children like Anakin continue to suffer.