Sammy Cavallaro would be a normal teenager if he wouldn’t have to deal with Type 2 spinal muscular atrophy, a disorder which has changed his life. Unfortunately, his illness traps him in a wheelchair and he needs permanent care. His parents must always watch over him and they usually spend their nights taking turns sleeping.
The family has to be around the teen at all times, and an attendant is needed permanently, even at school where Sammy needs to work on a computer. There are also difficult conditions for the exams, as Sammy can’t write so he needs to dictate the answers to an attendant.
“When you have children, you worry. With Sammy, multiply that worry by 100. My body no longer knows how to relax. He catches a cold and I think it’s the one that will get him. I worry for his life moving forward. What happens to him if something happens to us?” declared his mother.
However, there is a new medication that could radically change the life of the teenager. The bad news is that is very expensive, and it would cost $750,000 for the first year and $375,000 for the next years. The family cannot afford this and the medication is not covered by Régie de l’assurance maladie du Québec (RAMQ).
Lobbying
The Cavallaro family, as well as other families which deal with the same problem went to Ottawa in order to lobby for support. “We got exposure and that’s what we need. We were told that the issue is a provincial one. Now we need to meet with (Quebec Health Minister) Gaétan Barrette,” declared Aniello Cavallaro
They are hoping that they will meet with the health minister as well. The Cavallaro family was dedicated to the past in the previous years as well, and they managed to raise thousands of dollars towards finding a cause.
