Starting Our SMS Research Support Organization
§ September 30th, 2015 is a day that will always be etched in our minds. That is the day that we found out how much our world would change. Smith Magenis Syndrome. 3 words that we had to add to our vocabulary. A diagnosis that took our journey in a direction we did not expect. As we processed that information, we couldn’t help but look at our son Gavin. Even though we felt like our new lens of information changed everything, somehow in those first few moments, nothing changed. Gavin was and is, still Gavin. That beautiful grin, that contagious laugh, his love for hugs, his bond with his little brother Graham, and empathy for others. It was still there- despite of the challenges he has and will face.
Months passed by and a desire to learn more about SMS continued to rise. We eventually found the Smith Magenis Syndrome Research Foundation, and this was exactly what we needed to see. Parents of individuals with SMS not only raising awareness but also raising monies for research to make the quality of life better. This was our springboard for Grinning with Gavin.
Instead of being swallowed by sadness, we chose to join the efforts of SMSRF and turn our pain into purpose. We knew in our little village of the world; it was a mighty one. Even before his diagnosis Gavin had a way to make a lasting impression on others. It all starts with that grin. Hence, Grinning with Gavin was born and continues to grow as a nonprofit.
Our hope is to help aide in the awareness and donate funds for the continued works of the Smith Magenis Syndrome Research Foundation.
