Never heard of Ewing sarcoma? Be grateful. It is a cancer of the bone and soft tissue, affecting mostly kids and young adults but can strike anyone, anywhere in the body, at any age. Researchers pinpointed a chromosomal translocation as the cause. Ewing sarcoma is not hereditary, cannot be prevented and there is no screening.
It is simply a “bad luck” cancer. Diagnosis has proven very difficult and is all too often mistaken for growing pains or sports injuries. Survival rates plummet once this deadly, aggressive cancer spreads.
Reid was 17 years old in 2005 when he was diagnosed with Ewing sarcoma. He endured ankle pain for a number of years plus many doctor visits before the cause was found. The pain worsened over time and eventually tumours were discovered in his ankle, sinus cavity, rib cavity and pelvis.
We were waiting for the next sentence, ‘but there’s a cure. That sentence never came. After diagnosis, we were astonished at the lack of support groups and the short supply of research dedicated to Ewing sarcoma. Both of us knew that had to change – a seed was sown.
Reid dreamed of becoming a pilot in the Royal Canadian Air Force and was in the application process when he lost his battle with Ewing sarcoma on Nov. 25, 2007 at the age of 19, but not before realizing his dream of becoming a pilot, made possible through his job at the Buttonville Municipal Airport in Markham, ON.
Reid’s story and passion for aviation touched so many, including Loretta Lau-Lowerison, who worked with him at Buttonville. During his funeral, she and her husband, Ryan, performed a flyover at the cemetery in their Cessna, tipping their wings as Reid was laid to rest – a moment no one in attendance will ever forget.
Though I had no background in health care, I decided to start the Ewing Cancer Foundation of Canada with Reid before he died. Less than 5 years later, with more than a quarter million dollars raised, the Ewings Cancer Foundation of Canada is a registered charitable organization. Of late, we co-funded a Canadian research project whose recent remarkable findings were published in Cancer Cell, a distinguished medical report highlighting exceptional, significant cancer discoveries. We are now busy co-funding a second and third grant to Canadian researchers. Doctors have told us these funds are badly needed because there are very few labs in North America that are dedicated to researching Ewing sarcoma.
For me, this isn’t just a story about a rare cancer, but about the huge community of survivors and parents who have lost their children, many of whom are taking on the medical establishment themselves and achieving great results. We are educating not only the general public but also family doctors and other front line health professionals. We have produced an informational pamphlet that is bound for every family physician’s office in Canada, in hopes they will consider Ewing sarcoma as the cause of unexplained pain, hastening a diagnosis and preventing unnecessary death.
Reid’s legacy lives on, one I’m certain he would be proud of. He’d be thrilled to know Ewing sarcoma research is actually happening now, right here in Canada. He dreamt of serving this country in the RCAF and would have been so proud we are at the forefront of Ewing sarcoma research, treatment and, someday, a cure. He was a true Canadian and an inspiration to many.
More information on the ECFC or our signature fundraiser, Rally For The Cure, can be found at www.ewingscancer.ca or www.rallyforthecure.ca
– Tina Pernica