I’VE RUN A LOT of trail races and ultra marathons, like the Leadville Trail 100. But this year’s New York City Marathon was my first road marathon.
Earlier in 2018, on 12 March, my wife, Marya, gave birth to our son, Wyatt. He was born with Down Syndrome. I wanted a way to honour him and everyone else affected by the syndrome. So I decided to run New York and raise funds for others in the same circumstance.
This year has been hard. After Wyatt was born premature, we spent 67 days with him in the neonatal ICU. He left the hospital on a feeding tube, and we fight every day to keep him from having to go back on one. There’s so much involved with keeping him healthy – early intervention, physical therapy, occupational therapy. It’s been a tough journey.
Everyone with Down syndrome has a third copy of the 21st chromosome in all the cells in their body. But they’re all unique because it can affect so many things, and the effects can be moderate to severe. That makes the research hard to apply across the spectrum.
Heart defects are one of the biggest issues, and Wyatt will have open-heart surgery in April. He also struggles with eating because he has really low muscle tone, and the anatomy of his mouth is different. There’s not a ton of research on how to improve that, so it’s important to fund further interventions and resources that can help him and others.
I connected with LuMind Re