It all started on a cool summer evening on Bainbridge Island near Seattle, Washington where I was competing in a water polo tournament.
I called my mom to check in and tell her about my day, and she told me that my dad and I would be going to California in August to climb White Peak Mountain with Sean Baumstark (a pretty awesome advocate for Friedreich’s Ataxia.) For a kid who is infatuated with any notion of climbing, this was big news! I was equally excited for the opportunity to gain awareness for Dyskeratosis Congenita (D.C. for short) and Team Telomere: the organization committed to raising awareness and support for Dyskeratosis Congenita. D.C. is an extremely rare genetic disorder that affects the end cap of DNA called a telomere. Telomeres work much like a candle wick; as we age, telomeres get shorter. For individuals with D.C. or other similar telomere biology disorders, the telomere doesn’t function properly, resulting in problems such as bone marrow failure or skin pigmentation disorders.
As a kid, I had Aplastic Anemia, a common type of bone marrow failure caused by a telomere defect. It would be hard to say if I have D.C. because I only had bone marrow failure. I received an experimental bone marrow transplant in Boston, Massachusetts where I began my love affair with climbing. I was obsessed to say the least; I poured over countless books about high mountain summits, covered in snow and ice. I found a way to escape the bubble of chemotherapy-induced isolation through this world of rock and ice.
Soon, I was released, and I was determined to make my fantasy a reality. I began a journey that involved bagging a couple of local peaks and rock climbing in the nearby Quemlin Park. I also became interested in advocacy for D.C. Outreach, now known as Team Telomere. I began helping where I could, running races for Team Telomere and helping out with fundraising. I heard about Sean through a podcast called Two Disabled Dudes. My mom, Katie Stevens, was featured on this podcast, and she also became more involved with Sean and his partner in crime, Kyle. We later attended The Ataxian in Missoula, Montana where I met Kyle. I stayed in touch with Kyle and Sean through Instagram, and when Sean invited me on his De:terminence journey I was more than stoked.
On August fifteenth I’ll be heading to California to climb my first fourteen footer! This is the perfect way for someone like myself to help with not only Team Telomere and D.C., but the entire rare disease community.
Thank you, Riley for sharing your story and for your commitment and ambition to get stuff done!