Following June’s Ilan-a-thon Family 5k, a friend of Ilan and his family shared some thoughts on what makes the event so special for everyone involved. Our thanks to Bonny Ghosh for sharing.
I remember sitting next to Ilan in the ICU, meeting his gaze to see if he was enjoying the Elmo book I was reading him. Half a decade has passed since I looked into his precious face. Yet this many years later, it’s heartwarming to see the growing number of friends and family members who travel from different parts of the country to band together for the fight against Peroxisomal Biogenesis Disorders and participate in Ilan-a-thon. It’s a wonderful event that not only helps keep Ilan in our hearts and minds, but reminds us that so much more still needs to be done. When you consider the statistics, that 1 in 50,000 children are affected by PBD, it’s not hard to understand why walks like this are so very important. Since the number of affected children are relatively small with rare diseases, sparking public education and interest can be difficult. But Ilan-a-thon is a wonderful complement to the typical charity run/walk. It’s more of a celebration than a run. Call it the anti-competitive race. I like to think of it more as as happy walk-a-thon, chock with balloon animals, face painting and a big red fire truck. And after spending a gorgeous summer evening topped with cake and bubbles, it reminded me of why we come together for this cause: because every family and child matters.
We’ll be sharing more photos from the Ilan-a-thon soon! Stay tuned.