Those of you who know me, know that I’m a single mom raising a 13-year-old boy with Asperger Syndrome (a form of Autism), 7 co-morbidities and Myasthenia Gravis (a rare complex neuromuscular autoimmune disorder for which there is no cure).
While this is certainly quite a lot of responsibility to shoulder, it’s never been a burden to be the parent of such a unique and intriguing child. In fact, it’s been the most amazing life journey I could have imagined!
I suppose that, considering his mother’s Autism advocacy, it was only a matter of time before Lewis become a recognized voice for Asperger Syndrome and he’s worn that cloak well over the years. Just by being himself, he’s garnered quite a bit of attention … all of it positive and in the name of Autism Spectrum Disorders. Whether it was being a poster boy for the Peterborough YMCA fundraising campaign or asking the media for help in finding his long-lost kindergarten friend, Deryn Lamb, Lewis has always had a way with people that’s both endearing and educational.
So it comes as no surprise that he is flexing his advocacy muscles wherein Myasthenia Gravis is concerned. With only approximately 100,000 cases diagnosed worldwide, and with the diagnosis being 5 times more rare in children and youth than in adults, it’s no mean feat to stand out in the crowd in order to draw attention to the realities of MG. And recently, he created a video about MG entitled “Tell Me What Time It Is: My Life With Myasthenia Gravis.”
Lewis is a thorough sort of visual thinker. He created storyboards. He wrote a script. He chose photographs carefully to visually underscore his words. He researched little known details that pertained to the subject matter. He wrote the music for the intro and outro to the video. He directed and produced the master file. When all was said and done, all I had to do was be the gopher on the project.
Originally created in order to help his peers in Grade 8 understand his brand of Myasthenia Gravis and how it presents itself, he quickly realized that he could educate an entirely different demographic by asking me to post it at YouTube for him … and at Facebook … and everywhere else I and my friends and colleagues have a presence.
And so, it is with great pleasure (and pride, of course, since he IS my son), I invite all of you to view Lewis’ video, “Tell Me What Time It Is: My Life With Myasthenia Gravis.”