Damian’s Story

Damian was our first child so as first time parents, my wife and I really had no idea anything was different about our son. Now with a second child and the benefit of hindsight, we feel kind of silly. Damian was lethargic and hypotonic and incurious. But he was beautiful and physically fairly healthy, so we believed he’d “catch up” in the areas where he was lagging.

After many months of missed milestones, we began seeking answers. Over a year searching and several specialists later, we finally received the SMS diagnosis when Damian was 26 months old. March 24, 2008 – a day my wife and I will never forget.  As devastating as it was to read the available descriptions of SMS, he made much of those feelings melt away when he walked on his own just a few weeks later.

And that’s life with Damian; a series of impossible lows followed by indescribable highs. Furthermore, that’s SMS in a nutshell. It is unpredictable, emotional, hilarious, heart-breaking. To watch Damian struggle with the simplest of things; resulting with him in a seething tightly-wound ball of self-injurious punches and piercing screams is only remedied by seeing him struggle and succeed with something else later that same day.

We are fortunate that Damian doesn’t have any of the serious health risks many other SMS kids have. He is doing well in some areas but lags in others. He loves his little brother (usually) and his iPad. The ways to his heart include long baths, marble runs, bananas, maps of the world, animals, electronic games and pop music.

There is no purpose in sugarcoating SMS. It can be frustrating beyond words and can even be downright terrifying. However, with early diagnoses as well as improved and better targeted therapies, I absolutely believe we can facilitate some serious improvements in the lives of those with SMS – and also those indirectly affected by it.

The SMSRF is hugely important to me, as I believe in its mission statement and direct funding of purposeful research into the most basic genetic details into what makes my son tock when most kids tick.