ORGANIZER: CELIAC DISEASE CENTER
Most of you know how close to my heart Celiac Disease is. My son Ethan was diagnosed with this disease in 2009, when he was 4 years old. It was a life changing event. Initially, I was relieved. We had the answer to what was causing our son so much suffering.
On the surface it seems so easy to manage- just remove Gluten from your diet and everything will be fine. Easy right? Not easy at all. Gluten is everywhere. In almost every food and in every meal - especially "kids" food. The difficulty managing the diet logistically is one piece of it - but the worst part is how socially isolating this disease is, especially for a child. For Ethan and other kids with Celiac Disease every birthday party, holiday, visit to a friend's house, neighbor BBQ, school cafeteria lunch and school lesson that involves food (and trust me way more of the school curriculum than you realize incorporates food) is excluding - unless of course he brings his own food - but let's face it - it's just not the same. With Celiac Disease, life isn't casual and carefree. Every meal and snack has to be thought of and planned and will have to be every single day for Ethan's entire life.Though you can't see this disease with your eyes make no mistake Celiac Disease is a disability. Food is a basic necessity of life. Gluten is in most food either directly or through cross contamination. Celiac Disease is a permanent impairment of one of life's basic needs - eating.Awareness and diagnosis has increased a great deal over the last few years, thanks to the Celiac Disease Center at Columbia University - and we continue to be so grateful.If I had one wish in this world, it would be for Ethan have the freedom that comes with eating based on what looks and smells good and not have to base this decision on what won't make him sick - and for him to enjoy the casual freedom of eating with his friends without feeling isolated and different.
I hate running, my petite 245 lb frame is not built for endurance, unless you count multiple trips to the fridge, but I am going to run this marathon to support my son and all the others whose lives would be instantly changed if/when a cure is found.If you have made it to the end of this, thank you for your time and if you are going to donate know that you are donating to help a great cause with the added benefit of causing me pain for somewhere in the region of 5 hours come this November - but it will be very much worth it.
Thank you in advance for your compassion and generosity, Walter