Deanna McCurdy’s second child, Hayden, was 16 months old when she was diagnosed with Angelman Syndrome (AS), a rare neuro-genetic disorder that is often diagnosed as autism or cerebral palsy.
“We knew something was wrong,” said Deanna. “She was sick a lot, suffered severe reflux which would aspirate to her lungs, and she wasn’t reaching typical developmental milestones. The one thing that kept us going was Hayden’s beautiful smile. Despite all of her struggles, she was the happiest baby we had ever met. Only later did we learn that her overly happy demeanor was a characteristic of her condition.”
“After her diagnosis, another parent with an AS child called me and said, ‘This is just how it is,’” said Deanna. “That really didn’t sit well with me. I thought, ‘No, this doesn’t have to be how it is.’”
Deanna began to educate herself about AS, and through the Foundation for Angelman Syndrome Therapeutics (F.A.S.T.), an organization founded by parents who shared a similar passion to not just accept that their children’s life potential was so limited, she learned that there are many promising research studies, including one where the disease had already been cured in a mouse model.
The problem is that most of the research is privately funded.
“I knew I wasn’t brilliant enough to figure out the science, but I could combine my two passions –triathlon and the love of my children- to help raise money to support the scientists who will figure this out. I don’t know. Maybe this is just how it is. But it’s a lot easier to get out of bed in the morning if the future seems brighter than that.”
In 2011, Deanna founded Team Miles for Smiles to serve as a fundraising arm for F.A.S.T., much like Team in Training does for The Leukemia and Lymphoma Society.
Still, she downplays her role. “I think I’m more of a head cheerleader,” she says. “While my initial focus was to help raise money for research that would ultimately cure AS, what has evolved over the past few years has been even more rewarding than I ever imagined. I am constantly inspired when I see a fire ignite in people and watch them as they transform their lives on their way to crossing their finish line goal.”
Deanna describes how powerful it is to see a parent of an AS child train for their first 5K, triathlon or marathon and finish the race. “To watch the change in someone who previously sat on the couch thinking that life cheated them is incredibly moving. They start feeling better about themselves, their excuses disappear, and they begin to realize that while they might not be able to change their circumstances or child’s condition, they can change themselves. They become a different person on the other side of the finish line.”
Deanna also acknowledges that her life isn’t easy.
“Some days definitely aren’t all smiles. Sometimes I’m exhausted from battling insurance companies, cleaning up messes, and juggling the roles of special needs advocate, mom, wife, and athlete. But one thing I’ve learned is that we can either wallow in our own pity party about how life didn’t turn out as we hoped or we can embrace it and squeeze every morsel out of each day we are given. My daughter has shown me how to find joy in the little things and not take my talents or abilities for granted.”
Deanna was always athletic, running cross country for a small Division I college, but it was her husband who taught her how to mountain bike while they were dating. They spent weekends in the north Georgia mountains hiking and biking for years, but she didn’t enter her first triathlon until after Hayden was born.
“I raced my first XTERRA in 2013, a 15K trail run just outside of Atlanta where we were living at the time,” said Deanna, who now lives in Colorado. “I’ve always loved the trails because it is there where I have found solace, and connected with my inner soul. After finishing the race and being just surrounded by positive, encouraging, like-minded people, I realized that the XTERRA organizers and athletes share a similar love. What an incredible world that first race opened up to us.”
Coaching – or being a head cheerleader – is a role Deanna takes on with her own two daughters as well. Hayden, her Angel, is now nine, and Hailey is eleven. Deanna talks about how talented an athlete Hailey is, but also acknowledges that talent at this age is fragile. It can easily be squashed by too much parental pressure or not enough encouragement to allow them to find their own passion and niche.
“We just asked Hailey the other day if she would ever want to race triathlon like I do. She squirmed a bit in her seat and avoided answering the question. Sometimes I think she sees the pain we put ourselves through and thinks, ‘Why would I want to do that?’ Ha! Some days I ask myself that same question” says Deanna.
“I am okay if my daughter does not follow my path and does not race mountain bikes or triathlons, but I hope she continues to want to challenge herself to learn new skills, climb steeper, more challenging trails, and pedal on because no one else can get her to the top of the mountain but her own hard work and perseverance. If she can continue to do that, I know she will have the confidence to do anything she sets her mind to doing.”
“Not only is Deanna racing for an incredible cause, she races incredibly fast,” said XTERRA President, Janet Clark. “She is a two-time regional champ. She is a two-time national champ. And at the XTERRA National Championship last year, Deanna was the fastest amateur woman with a time that would have been 6th among the pros. At XTERRA Worlds last year, she was second in her age group behind Mimi Stockton.”
Last year, Deanna focused her energy on helping her husband qualify for XTERRA World Championships because his age group is so competitive.
“My husband David is always so supportive of me and goes on crazy training rides and runs without complaining,” said Deanna. “We were thrilled when he was able to qualify through the lottery for XTERRA Worlds. We were so happy to be going together. The night before we were going to leave for Maui, we had our plane tickets, our bags were packed, and the grandparents had flown in from Georgia to watch the girls. But I realized I hadn’t received any race information.”
Deanna had forgotten to register herself for the race.
“I made a frantic midnight call to Janet Clark who told me to just get my butt on the plane and she would take care of me,” said Deanna. “I try to portray the image that I have all of my ducks in a row, but clearly at times, those ducks are swimming in all sorts of wayward directions. Thankfully, we have amazing people who love us, support us, and give us that extra hug when we need it.”
Learn more about Angelman Syndrome and how you can help at www.cureangelman.org