The Beginning As Told by Our Founder
- Ryan "The Dude" Weimer -
First of all, if you haven't heard the term Muscular Dystrophy (MD), check it out at MDA.org. You might have heard of a small movement called the Ice Bucket Challenge? This craze is helping to raise awareness for ALS, a branch of MD. Join us on this adventure as we help to bring hope and awareness to another branch of MD called Spinal Muscular Atrophy (SMA).
We have five children. My first son, Keaton, was diagnosed at 9 months old with SMA and this diagnosis has forever changed our family and how we do things. I could write you a long, sometimes difficult, but ultimately amazing story of our adventures with our children and SMA, but for now let's just say that we have to look at life through a different set of lenses than the average man or woman.
That's what really set this whole project in motion five years ago when Keaton got his first wheelchair. Enter Halloween 2008. "Hey, pal. What do you want to be for Halloween?" I ask. Keaton thinks for no more than a second and responds, "A pirate." My thoughts go a little like this, "Ah, cool, at least he doesn't want to be Dora the Explorer, one of his favorite shows at the time." A couple days later I had one of those moments when my brain decides it's the best time for thinking - this usually seems to happen way too early in the morning when I should be sleeping or in the shower - but during this magical thinking moment I realized, "Keaton has this wheelchair he cruises around in, and every pirate needs a ship, so let's just build one around his chair!" I didn't know how I was going to do it, but I knew it could be done somehow. I don't believe that there are any goals, dreams, or aspirations in life that can't be achieved. And besides, I was only building a pirate ship, not finishing a PHD in engineering. I drew out some rough plans, and had to start over once or twice, but in the end we came out with a pretty awesome pirate ship for Keaton to sail around in for Halloween.
Keaton loved it! What kid wouldn't love having a pirate ship to roll deep in, sailing through the streets, collecting Halloween booty? He even made the front page of the newspaper!
So that's how this all started. Now every year as I pose the question, "What do you want to be for Halloween, Keaton?" I can't help but cringe in anticipation of the challenge that each answer will issue. It's always fun, frustrating, discouraging, occasionally painful, and (my wife would add) expensive.
Ultimately, creating each costume provides an awesome experience: taking something from Keaton's imagination and seeing it realized as we hit the streets with our kids leading the way. People are amazed and it is a great opportunity for us to let people know about SMA and MD. Absolutely the most rewarding thing is hearing my kids say along the way, "That's awesome, Dadda!"