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My Daughter has Angelman Syndrome. She's The Reason Why I Race

By Deanna McCurdy | March 25, 2019, 11:06 p.m. (ET)

Deanna McCurdy

I signed up for my first triathlon nine years ago. My 16-month-old daughter, Hayden, had just been diagnosed with Angelman Syndrome (AS), a rare genetic disorder that affects one in every 15,000 births. As Hayden pushed herself every day to learn how to stand, to walk, to communicate using assistive devices (she is nonverbal), and even eat, I challenged myself with learning the sport of triathlon. I wanted to use the sport to help raise money and awareness for her condition.

I soon discovered that triathlon became a metaphor for our life. I wasn’t a natural swimmer, so learning proper swim techniques was a challenge for me. Swimming in a race was new territory to navigate, similar to the special-needs world I had been thrown into. Just when I thought I had figured out the swim, a wave would splash me in the face or I would get kicked by another swimmer fighting for space in the water. 

Here’s the thing I’ve discovered with swimming: No matter how hard you get pummeled, you have to keep moving your arms and legs or you will sink to the bottom, just like in life. Many days I want to throw in the towel, but I have a child who needs me to not only care for her, but be her voice, to fight for her and help her reach her full potential—so I have to keep moving forward.

I’ve always loved the outdoors. I grew up riding bikes with friends around the small Georgia town where I grew up. I learned how to mountain bike while dating my husband, who has become my training partner and biggest cheerleader on this journey. Little did I know that something I did for fun on the weekends before having a family would help pave the way for not only mental therapy sessions in the woods, but also success in the sport of triathlon.

Learning how to race on a bike was work, but it was such rewarding work, just like overcoming daily challenges and not giving in until they are figured out. Grinding away over steep, rocky terrain with burning lungs and straining legs is incredibly hard, but unbelievably rewarding once you reach the top of a mountain and look back on where you came from to get to where you are now. 

Now the run ... my background before triathlon was running, so I have always loved the run. But in triathlon, the run takes on a whole new meaning. When a triathlete starts the run during a race, her arms are exhausted from the swim and her legs have nothing left after powering a bike through a challenging course. In order to succeed on the run and cross the finish line, one must run from the heart. It is the heart, the passion for a greater “why,” that will push the body to the finish line. I love the sport of triathlon because it combines my passions: my love of my daughter and my dreams for the future where Hayden can cheer with her own voice and ultimately run her own race; and my passion for a sport that has taught me so much about myself and about life. 

I think finding one’s “why” is key to success in the sport. Before my daughter’s birth, I would run races on weekends, often struggling mentally during the race once my legs started burning. I would find myself giving in to the inner voice that pleaded with me to slow down.

My daughter and so many others with debilitating conditions have opened my eyes to how fortunate we are to be able to push our bodies and see what they are capable of doing. Now during a race or even a really hard workout, I remind myself that I don’t have to do this. I get to do this. Those words become my mantra to push through the pain.

Deanna McCurdy family

There are so many people in this world who wish they had the opportunity to use their arms and legs to swim, bike or run, but can’t. I am so lucky that I get to race for them and for me. Hopefully, somewhere along this journey, I will inspire others who feel like life has not turned out the way they planned to get off the couch and set a goal for themselves, whether it be their first 5K, triathlon, or even just going for a walk out the door. 

Life can change in an instant. I learned that the day a neurologist called and told us our sweet 16-month-old daughter had a condition that would inhibit her ability to talk; cause life-threatening seizures, balance and coordination issues and developmental delays; and would require 24/7, lifelong care. Our life is so different than the one I once dreamed, but it is full of a greater purpose, love, and appreciation for the little things and people who are in it. I wake up each morning and embrace the day and the challenges and opportunities it brings—for I understand now that tomorrow, next week, or next year I may not be able to do what I can do now.

I am grateful I discovered the sport of triathlon (specifically XTERRA off-road triathlon) over these past few years, the people I have met because of it, and the finish lines I have crossed. I’ve accomplished more than my wildest expectations. I was awarded USAT’s Amateur Off-road Triathlete of the Year in 2017 and 2018; won my age group at the XTERRA World Championships in 2018; finished as the top amateur American at XTERRA Worlds in both 2017 and 2018; was the top overall amateur female at the XTERRA PanAm/USA National Championships in 2016, 2017, and 2018; and placed first overall female at the USA Triathlon Off-Road National Championships in 2017 and 2018.

Life isn’t what I imagined it to be. It truly is so much better.

Deanna McCurdy is the founder and head coach of Team Miles for Smiles-Wings to Fly Racing. Miles for Smiles is a training team created to help raise funds for the Foundation for Angelman Syndrome Therapeutics (F.A.S.T.), a not-for-profit whose sole purpose is to fund research, and ultimately a cure for, Angelman Syndrome (AS). When her daughter Hayden was diagnosed with AS, Deanna was moved to start racing triathlons as part of that fundraising effort. Deanna quickly excelled in off-road triathlons, and recently earned her pro card. Deanna and her family make their home in Littleton, Colorado.