Tyson Fetzer is running for the National Organization for Rare Disease
"Someday Lily has a dream to run the Boston Marathon, but this year I will be doing that for her. "
In our “Why I’m Running” series, Boston Marathon runners share what’s inspiring them to make the 26.2-mile trek from Hopkinton to Boston.
Name: Tyson Fetzer
Age: 36
From: Needham
This year I am honored to run for the Running for Rare Disease Team. As part of my commitment to the team and my community partner, I am raising $7,500 to benefit the National Organization for Rare Disease.
This year it’s my honor to run for Lily, an 18-year-old high school student from Colorado who was recently diagnosed with Ehlers-Danlos Syndrome (hEDS). I’d like to share a bit about Lily and why it’s such an honor for me to run for her and the Rare Disease Community this year.
Prior to Lily’s diagnosis, she was living a normal life and was an exceptional runner, winning cross-country meets and even running a half marathon. Since Lily’s diagnosis, she’s had intestinal failure and other complications that now require her to be on a feeding tube for 22 hours a day. Lily also recently underwent a procedure to implant a pacemaker device as a result of Sinus Node Dysfunction.
Despite these challenges, Lily still strives to find time for running or walking on the treadmill to fulfill her love of running. Lily and I have bonded over that and she’s an inspiration for me on the days when it’s too cold, too windy, or maybe I’m too tired to train. Someday Lily has a dream to run the Boston Marathon, but this year I will be doing that for her.
Editor’s note: Entry may have been lightly edited for clarity or grammar.
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