On May 5th 2008, I got the text message that would change my life FOR.EVER. "Owen has SMA". What the hell is SMA? I called Katie my personal PA. We frantically googled SMA. Links for Solar Technology and Southwestern Medical Associates were the first things to show up in my search followed by the answer I was not prepared for at all: "Current statistics show that the average lifespan of a child with SMA Type I, not put on permanent ventilation or "life support", is only 8 months of age, with 80% dying by the age of one, and the majority of the rest dying by age 2." In the meantime Moe sent out an email confirming the reality of this horrific disease and kindly but honestly let Dorothy's friends know she was not accepting calls, text messages, emails, etc. When she was ready she would contact us. On top of the shock, heartache, anger, sadness, fear, was a huge layer of helplessness...Dorothy had come to be one of my best friends over the years-she was the first person to text me the morning of my Chicago Marathon, my go to person, my good times girl, a friend that we could talk for hours upon hours or sit in silence comfortably with, we survived the death of grandparents, friends, and pets together. Finally, one of the many nights I stayed up wondering how I could help, I decided to run the Dublin Marathon in October in HONOR of Owen. I started to fundraise to help Dorothy and Jon pay for their medical bills for Owen's care. Unfortunately, SMA decided to be a bigger jerk than it already was and took Owen on Saturday, August 16, 2008. My run in HONOR of Owen became a run in MEMORY of Owen. Since October 27, 2008 I have ran all races with Owen on my back and in memory of Owen. Time keeps moving on which brings me further and further away from the last time I held Owen, the last time I saw Owen, the last time he smiled at me-through all of the machinery. Running among the strongest people who are running for themselves or for their own personal cause like myself, helps me stay close to Owen-it’s my time, my memories, my way of fighting SMA.
Because of Owen, the Strong Family entered into my life, they have become like family to me. Raising awareness and money won't bring Owen back but it will help keep Gwendolyn here on Earth as long as possible. Please help us FIGHT SMA, in memory of Owen and in honor of Gwendolyn! Thank you!!
8.7.11 5k at Yankees Stadium with Dylan
9.25.11 18 mile NYC Tune up in memory of Ciara Van De Loo
10.1.11 Grete's Gallop 13.1 in honor of Gwendolyn's 4th Birthday
10.16.11 Newport 26.2 in Memory of Owen
11.6.11 NYC 26.2 in Memory of Owen
11.12.11 Santa Barbara 26.2 in honor of Gwendolyn, Owen Simmons and Owen Shuler
"There is no telling how many miles we will have to run while chasing a dream."