My name is Sammy, I am 15 years old and I was diagnosed with Spinal Muscular Atrophy (SMA) at just 9 months old. Doctors told my parents early on that I wouldn’t live past 3 years old, but here I am twelve years later, a grade 10 student who continues to smile and live everyday thankful for where I am.
SMA is a disease that affects and unfortunately destroys the nerves that control voluntary muscle movement; as a result I am unable to do certain things on my own. I am unable to walk, unable to use my left arm, unable to feed myself, dress myself and unable to sleep without assistance breathing. These are all things I have learned to manage with the help of my family and friends. There is something else very close to my heart that I can’t do on my own . . . and that is fundraising.
I have been granted an against the odds life, where every moment has and continues to be cherished so I make it a point to continuously raise funds and awareness about this disease, in hopes to one day find a cure. Every year, for the past 13 years my family and I have hosted a Valentine’s Day Gala where all proceeds go to SMA research and families affected by SMA. We have raised over 1 million dollars and are only aiming for more in the future! There’s a reason I am still here today, and I think this is why!
My favorite quote is “Every day is a good day as long as you’re alive” and I’m happy to be giving my good days to a good cause!