Your flaws make you who you are; don't deny your imperfections, embrace them. This is the root of Mandy Boreskie's biographical tale which recounts her mother's life and struggles with a very rare and deadly syndrome called "Sturge-Webbers", as seen...
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The woman in the photo is Michele Theresa Beaudoin, firstborn child to Helen and Michael, sister to Kelly and Jenifer, and mother to Maryann, Michael, and me. The caption under the photo reads, "MICHELE TAKES advantage of the Salvation Army's Men's Hostel, where the needy can now get soup, coffee and bread nightly," taken by Windsor Star photographer Derek De Bono. The article explains that thanks to this new program, "Windsor's needy no longer have to sleep with empty stomachs...," and goes on to detail the difficulties endured by these individuals who are left out in the cold-winter months with no shelter, heat, food, or money. It illustrates how, for the most part, they have beco¬me society's forgotten ones.
As the story goes, the journalist sent to the Salvation Army to write the report that evening was so overcome with emotion in viewing this "poor dear woman, sitting all alone," that she insisted the photographer capture her photo immediately. It was this photo that landed on the doorstep of my grandparents' home the following day. Even now, decades later, you can still see my grandfather's eyes well up as he recalls that morning: "I was heartbroken...I didn't understand. She didn't have to be there, you know." After a long pause he adds, "She was always welcome with us."
Although from the picture you can see what appears to be a lost and lonely woman, in desperate need of a helping hand, what you can't see is her birthmark. By the time this photo was taken, Michele had undergone enough laser surgery to fade a large port wine-coloured birthmark that went from her forehead and upper eyelid down, covering almost half of the left side of her face. But Michele's birthmark wasn't just that; it was an extra layer of blood vessels over the surface of her brain, also known as an angioma, and it was the first indication that she was born with the rare disease Sturge-Weber Syndrome (so named after the doctors who first described it in the late 19th century).
Sturge-Weber Syndrome is a condition that starts very early in pregnancy during the baby's development in the womb. It has been hypothesized that somewhere between six to nine weeks of pregnancy, while the tissue that will eventually form the skin and brain are still closely related, a network of blood vessels continues to develop instead of separating and causes an extra layer of blood vessels over the surface of the brain. The reason for such abnormal development is undetermined, but it has been asserted that it is not a genetic condition or a result of anything done or not done during pregnancy. Despite these facts, however, it's evident that my grandparents could never help but feel somewhat responsible for my mother's disabilities; after all, she was their child.
By her first birthday, Michele was experiencing anywhere from a few to fifty seizures a day—one of the many symptoms of the syndrome associated with the angioma. Being one of the first of three cases of Sturge-Weber Syndrome ever diagnosed in Canada, Michele was an anomaly to doctors, and it wasn't long before she became a guinea pig for their experimental procedures and drug testing: tests which ultimately confirm that treatment for Sturge-Weber Syndrome is merely symptomatic at best.
