Fight For Owen Bowling NightSeptember 27, 2011 by Victoria
If you've been reading this blog for long, then you already know about our love for the amazing Shuler family and their beautiful baby boy, Owen. Owen Vincent Shuler was born March 7, 2008. Just like Gwendolyn he was diagnosed with SMA Type 1. And just like our family the Shulers immediately sought out SMA doctors and help to manage this cruel disease. And just like Bill and I, Jon and Dorothy love their child with every fiber of their being. But, sweet Owen passed away at only five months and 9 days old.
It has been three years since Owen passed in August of 2008, but not a day goes by that he isn't missed. Every year Dorothy and Jon have organized something in his memory, including Dorothy running the San Diego Half Marathon on the year anniversary of his passing. This year they created a bowling night to celebrate and remember their special boy, raising funds for GSF and Two Towns, a local charity that helped them following Owen's diagnosis. Friends and family from all over New York came out to support the Shulers, which meant so much to them. Dorothy wrote this on the Fight For Owen blog:
Its been 3 years since we lost Owen. To be honest, its not always easy to talk about him or to ask people to take time out of their busy schedules to remember him with us. Ive said before, that I cant promise I wont cry if I talk about him but I can guarantee that I will cry if I dont. For me, what would be worse then what SMA did to Owen would be for people to forget him. So as his mother, I will make sure no matter how difficult it may be, that my brave little boy is never forgotten. Thankfully Owens little sister Natalie (who just turned one last week) has brightened our lives again; but the hurt of losing Owen has not, nor will it ever fade. So from the bottom our hearts thank you for helping keep Owens fighting spirit alive, it means the world to us.
We are so honored to receive a donation for $325 in Owen's memory. Thank you Shuler family and all those who participated in this event. We love you Owen.
On the heels of the success of the "$200K For SMA -- Phase One" campaign, in March 2011 theGSF launched "$200K For SMA -- Phase Two" to fund the first ever SMA pre-clinical animal model. theGSF...