It started with this picture my sister posted on Facebook last January.
She was in Florida because her husband was pacing a friend that was running in the runDisney Race Weekend. She told me that she was going to run on behalf of a charity next year and that I should join her. I was high on training for a 25K last April when, on a whim, I registered to run the half marathon for the A-T Children’s Project.
Like most people, I did not know the first thing about Ataxia-Telangiectasia, I was just peer-pressured by my sister. A-T is a very rare genetic disease that affects the nervous system, the immune system, and other body systems. There are only about 500 kids in the United States with A-T, and that means that the only research money comes from grass roots fundraising, mostly initiated by family and family friends of children with A-T. Most kids with A-T do not live past 20, and they are usually wheelchair bound by adolescence. They have a weakened immune system which usually leads to chronic lung infection and they have an increased risk of developing cancer. It is incredibly hard for me to imagine the struggle that these families go through every day, and as I learned more about A-T, I was glad that I was doing something to help. In my head, I have committed myself, for the rest of my life, to raising funds for the A-T Children’s Project and doing something about this total crap disease.
My sister got involved with the A-T Children’s Project as she got to know a family in west Michigan that have two daughters with A-T. In August, she held a picnic to raise money for the ATCP. She sort of let me help a little bit. I briefly met the Veldink family and I was captivated as Mary, the matriarch of the family, took the microphone and thanked us for being there, because in the face of this hopeless disease, our presence and our fundraising gave them hope. I watched the family from afar the whole night. They were always smiling, always laughing. I was inspired by their strength and grace and totally unsure if I would find that kind of courage if I were in their place.
I started training for the half marathon a couple of weeks ago. This past Sunday it was so cold and I did not feel like doing a long run and I made a crack to Mark that I hope he enjoyed his lazy morning while I was out running to save someone’s life. I called him a selfish jerk and he told me I should have signed up for the 5k instead. We laughed. It was funny. I posted it on Facebook. I had no idea that at that very moment, the youngest Veldink daughter, Olivia, was, in fact, fighting for her life.
I am so devastated to hear of her passing yesterday. She was 13. I only met her briefly, but I could tell that she was an inspiration and a light to all those around her.
I am incredibly humbled to be participating in the 2015 runDisney Race weekend on behalf of the A-T Children’s Project, where their motto is Kids. Hope. Cure. And I will now unabashedly ask you for your donations. Please help give this family, and all families with A-T, the hope that they desperately need.
You can donate here: http://atcp.org/seejillrun