Words & Visuals: Rebecca Meloche & Caitlin Yardley
“I don’t want to make this about me,” said Sammy Cavallaro timidly as he looked down at his phone.
“But you’re going to anyways,” laughed Rosa Cavallaro, Sammy’s mother.
In the comfort of their home in Kirkland, a suburb west of Montreal, the Cavallaros sit in their living room as they reminisce on how far they have come as a family and how much work there is still to be done.
At nine months old, Sammy Cavallaro was diagnosed with Spinal Muscular Atrophy. SMA is a motor neuron disease that affects the main muscles throughout the body that are used for everyday things such as walking, swallowing, and neck and head control. Those affected will generally feel more weakness in the legs in comparison to the arms. Due to the effects on the respiratory muscles, those living with the disease are at a higher risk of pneumonia and other lung problems.
Originally diagnosed with type one–the most severe form of SMA–Sammy’s diagnosis changed to type two. The main difference between the two types, explained Rosa Cavallaro, is that Sammy was able to sit up on his own for a couple of seconds when he was younger. Sammy is now permanently in a wheelchair.
About one in 6000 children are born with SMA and approximately one in 40 people carry the gene.
Sammy was given two years to live. Now at 18 years old, Sammy attends John Abbott College, focusing on business and marketing. He is an expert in social media with experience and success in gaining himself and others followers.
With over two million followers on his instagram page, @sickhighlights, Sammy posts sports highlights and receives thousands of views per video.
“At first I started off for fun with a hundred followers, then when I hit a million after two or three years, it was crazy. I was just like ‘Wow!,’” explained Sammy. Not long after that, his instagram account got hacked and he lost all his followers. His parents wanted him to quit because it was a lot of work and a big stress on Sammy.
But he did not give up.
He got his following back and now sells his expertise to companies, restaurants and athletes such as MC Mario, Le Cinq and Excellent ATM. “People want followers,” laughed Aniello Cavallaro, Sammy’s father. And that is exactly what Sammy is able to do.
Through his instagram page, Sammy began his own company: Sick Media Agency. There, he is able to provide social media marketing and branding to his clients all from the comfort of his home.
“He can’t go outside and play hockey or go wherever he wants,” explained Rosa. “This is what he does.”
Sammy’s family has always been his number one supporter. In March of last year, the Cavallaro family, including cousins, aunts and uncles, jumped on a bus and headed to Ottawa where they protested in front of Parliament. The goal of the protest was to get the government to subsidize nusinersen, a drug specifically made for SMA and marketed as Spinraza. When injected into the spinal cord, the drug slows the effects of SMA.
In December 2018, the Quebec government announced that they will be giving access to Spinraza for patients with types one, two, and three. The drug has been available across the country for type one, but Quebec is now the first province in Canada to give access to the drug for types two and three. It comes with a high price tag: US$750,000 in the first year and US$375,000 every year after that.
“My family is everything to me. My mom does everything for me, my dad and sister also. Not only them but my cousins are always here supporting me,” explained Sammy.
The Cavallaros are not stopping the fight now that the drug is available in Quebec for people with types two and three. “Hopefully we get Spinraza approved for everybody and there’s other drugs coming out so hopefully they get approved. I think we’ll be able to do it,” explained Aniello adding that “our goal is to stop the progression of the disease and everything else is bonus.”
In 2000, three families came together and created the organization “Families of SMA Canada.” Today, that organization is incorporated and continues to grow and is now known as “Cure SMA Canada,” the sister organization to “Cure SMA (USA).” The organization funds research and supports families through their fight with SMA. “A very high percentage of money raised goes to research. There’s no overhead because it is all parents and families that raise the money,” said Rosa. Reflecting on what the organization means to her and her family, she said that they are more than simply an organization, they are a community.
Back in the Cavallaro living room, Aniello reflects on Sammy’s long journey and his positive attitude: “Sammy has every right to complain but he never does so it makes life a lot easier too.”
Julianna Cavallaro, Sammy’s older sister, laughed and said that Sammy will get mad at her and her parents when they begin to complain. “We have the best life” is one of Sammy’s famous quotes.
“Ever since I was young I always thought that you have to stay positive because there’s always worse in life. I have family and friends, so even if I can’t do some stuff, I can do it in different ways,” explained Sammy.
For Julianna, her brother is her inspiration. “I’m proud on a daily basis. It’s crazy when you look at all the petty problems that everyone goes through and everyday things for us are so easy and [Sammy] just does them with a smile. [Sammy] wa
s dealt a difficult hand and he just handles it with a smile and every day is a good day. He teaches me a lot on a regular basis.”
“I’m very proud of both of them,” Rosa said of her two children. “I’m proud of the family we are. We get up and we go. We don’t sit back and let things get difficult for us. It’s very easy to not do anything but we’re all in the same boat and we pick up our pants and do what we have to do.”
The sense of family is undeniable. Their relationship is close. They are able to laugh at each other and get serious when they need to. Aniello could not help but repeat that people must think they are crazy when they speak.
Even though Sammy is shy and does not like the attention, he wants people to keep awareness. “I’m proud that I can be an inspiration to so many people. People that meet me and my friends and family, I think I can be an inspiration to them and to other people with SMA and everybody. You have to realize that life is good and that we have to be positive.”
“You’re going to leave here feeling like a better person,” said Aniello.