By Rhonda Massad
Kirkland's Cavallaro family has raised more than $1.3 million for research to cure the once-fatal disease called Spinal Muscular Atrophy (SMA). You would expect those suffering with this disease to be happy when the recent drug Spinraza was discovered to reverse the progression of SMA. Of course, the obvious celebrations must have occurred until the dust settled and parents of young babies learned that not everyone was eligible to receive the drug.
SMA has four levels of severity. Type I is the most severe and type IV is the least severe. Kirkland resident Sammy Cavallaro has type 2. He is not eligible for the drug in Quebec. The Quebec Government opted not to cover the drug even though it was recommended for approval at the Federal Level.
Sammy was born August 18th, 2000. A healthy baby boy until he was diagnosed with Spinal Muscular Atrophy at the age of 9 months. His parents were told that he was a Type 1 which meant that he would most likely die before his second birthday.
Sammy Cavallaro has SMA and has beaten all odds and lived past his life expectancy of 2 years old. He is currently running his own securities business, has more than 3.5 million followers on Instagram and is an honour student at John Abbott College. He is 17 years old.
Last Tuesday, Sammy, his parents Aniello and Rosa along with 40 supporters joined the Canadian Branch of CureSMA and took their plight to the steps of Canadian Parliament. There were more than 100 Canadians chanting "Spinraza for all" in hopes of being heard by those governing. Sammy's representative made sure to carve out a few moments to greet the West Island family.