BENEFITING: Parent Project Muscular Dystrophy
ORGANIZER: THE IRONMAN FOUNDATION
EVENT: Your Journey Your Cause 2017
I met Devan, my girlfriend’s nephew, at her sister’s house about a year and half ago. A bright little boy with as much energy as you could imagine! All smiles and a big heart, he hugged and welcomed me into his home as did his parents.
Prior to arriving, Rajul had told me that Devan was fighting a fatal disease, Duchenne Muscular Dystrophy. Rajul filled me in on the disease and what I could expect during our visit. Devan had just turned 4 and was already taking steroids to help combat the muscle loss from the disease. The side effects made him extremely hyper and prone to mood swings.
After that first visit, I started to read up on the disease and found that the typical lifespan is mid to late 20’s. While I was reading up on Duchenne, I was spending more and more time with Rajul’s sister’s family. And all the while, this little guy was showing me how big of a heart he had, and he was capturing my heart in the process.
Now, I have to say that I am the luckiest person I know, as I have three healthy and beautiful children of my own. That being said, I knew I wanted to help Devan however I could. His parents were already doing everything they could and the rest of the family was helping as much as they could.
This is when I had the idea to raise awareness through my Ironman racing. This is a huge challenge for anyone...but pales in comparison to the everyday challenge that Devan faces. I only need to endure something for a day. He does it everyday, all day.
Now, I know we all get bombarded everyday for this charity or that and that we have already given here or there. But I am just asking, even if it’s just a dollar, please help me raise the money to help me reach my goal. It’s not for me, but for Devan...because a world without this little bright ray of sunshine would be a world missing a beautifully innocent soul. We, and I speak for all of us, need to help rid this world of such a terrible disease.
Thank you in advance.