Heart of Gold…Deanna McCurdy

Deanna McCurdy Cover May 2012

Deanna McCurdy Cover May 2012

The Augusta 70.3 Half-Ironman triathlon race began at 7:30 a.m., but because of how it was set up with over 3500 participants, my swim wave didn’t begin until after 9 a.mAs I watched the athletes before me begin their race, calm came over me. No longer was I anxious about swimming in the Savannah River, worried about the heat of the hot September day or whether I could even finish the race. It was now time for me to do what I could do, to make them proud, to swim 1.2 miles, bike 56 miles and run 13.1 miles, for my sweet little girl.

It’s a lovely warm morning in late March, and Deanna McCurdy is sipping a latte at an outdoor table at a Peachtree City Starbucks. Wearing running gear (shirt, skirt and visor plus a pair of bright blue trainers) and relating her daughters’ latest escapades, she might easily be mistaken for a typical stay-at-home mom who’s relaxing after a morning run.

Except she isn’t. Mom, yes; runner, yes. Typical—no, not at all. Deanna has discovered a way to draw on her talent as a runner and her love as a mother to serve a greater purpose, inspiring and galvanizing others along the way.

A Peachtree City native, Deanna (who grew up as Deanna Walsh) began running track when she was in junior high school, at the encouragement of one of her teachers at J.C. Booth. “Back then, I really didn’t like running,” she admits. But despite her lack of passion for it, Deanna found she was actually pretty good. “Since it was something that I could do fairly well, I stuck with it on and off through high school, eventually running cross country for Coach Charles Buckle at McIntosh High School my senior year,” she says. She would parlay her talent into a college scholarship, running cross country at the University of Evansville, a small Division I school in southern Indiana.

The McCurdy family on a much needed spur of the moment trip to Disney World in 2009, just two months after receiving Hayden’s diagnosis.

Once she’d graduated from college and moved to Cincinnati, she considered giving up the sport, but for some reason she felt she couldn’t. “I wanted to be a ‘normal’ twenty-something, staying out late on Friday nights, sleeping in Saturday mornings, but something kept nagging at me,” Deanna explains. “Something kept telling me that God gave me a talent and I was supposed to use it. I didn’t fully understand this thought, but continued to run, trusting that a bigger picture would eventually be revealed to me.”

Deanna then moved back to the Atlanta area, settling down in Marietta. Within months of her relocation, she met her future husband, David McCurdy, who was also a Peachtree City “old-timer” (his family had come to Peachtree City in 1972). Like Deanna, David’s idea of fun was to get outdoors; their dates included mountain biking, hiking, camping, and of course, running. Deanna credits David with helping her begin to truly enjoy running, especially on trails. They were married in September of 2002.

In 2005, the McCurdys gave birth to their first daughter, Hailey. “She is so much like the two of us, full of energy, creative, and a lover of sports,” Deanna remarks. After her birth, Deanna and David backed off competing in races, but had fun running the trails up by Kennesaw Mountain. Even as she continued to wonder why she was drawn to running, Deanna signed up to coach a Girls On the Run group and would practice with the older girls while two-year old Hailey, the “team mascot,” ran around the fields as the girls trained. “I began to think that maybe this is what God had intended me to do with my running abilities,” Deanna says. About the same time as she allowed that thought to develop, the McCurdys found out that they were pregnant with their second child.

I made it through the swim, and happily passed people all along the bike course, reflecting on how much fun it was to be touring the Eastern Georgia and South Carolina countryside. As soon as I began the run, though, I discovered what so many of those tests God had been giving me were all about.

Hayden crossing the finishline at the 2011 Race for Riley, 2011. With Hayden is Amy Murray, Principal at Joseph Sams Schools and mom, Deanna. This was Hayden’s first “tot trot fun run”.

In March of 2008, Deanna gave birth to the couple’s second daughter, sweet little Hayden Grace. Unfortunately, Hayden stopped breathing at home when she was a week old. She was rushed to Scottish Rite Hospital, and Deanna and David spent the next 10 days with eyes fixed upon her, watching her every breath, waiting for answers. They were sent home with a cart full of monitors and medications, and with the diagnosis of severe reflux with aspirations to the lungs.

For the next six months, Deanna and David slept in shifts every two hours. Little Hayden rarely slept and was continuously plagued with sinus and ear infections as well as bouts of pneumonia. However, throughout all of this, she constantly smiled and rarely cried. “I would drag myself out the door for a run, seeking solace and prayer time on the trails, oftentimes crying out to God in anguish, wanting to know why he would make such a beautiful little child suffer so much,” Deanna recalls.

By the time Hayden was nine months old, Deanna and David began to notice that although she could sit up by herself, she made no attempts to crawl, talk or explore the world around her. “She would sit in the middle of a room for hours, perfectly content mouthing the toys around her, laughing and just being her happy little self,” Deanna explains. When Hayden was 16 months old, the McCurdys brought her to a pediatric neurologist and learned that her happiness could be a symptom of her problem. As further testing confirmed, Hayden was diagnosed with Angelman Syndrome (AS), a rare, neuro-genetic disorder that involves a missing segment of the maternal 15th chromosome. Characteristics of Angelman’s include seizures, inability to speak, sleep and balance disorder, cognitive impairment, and as Deanna had noticed, an overly happy demeanor.

Temperatures soared to above 90 degrees and the sun came beating down. I shuffled along, having no idea what my pace was, feeling my skin alternating between goose bumps and tickling numbness. I hunted down water and ice at each water station, ready to be done, but never thinking of quitting.

The McCurdys moved back to Peachtree City in December of 2009. “We wanted to give our girls the type of childhood life that both my husband and I had,” explains Deanna. “Old and new friends welcomed us back with open arms. We quickly learned that even when Hayden was really sick, a golf cart ride could make all things better for a little while.”

The McCurdy family at the 2011 Race for Riley.

The couple joined both the Peachtree City Running Club and Tri-PTC, looking forward to getting involved and giving back to the community. “But Dave and I were far from triathletes and the thought of swimming in a lake sent shivers up my spine,” Deanna remembers. “I struggled through panic attack upon panic attack each time I attempted to swim in Lake Peachtree, remembering the water moccasins I would see swimming around while fishing there as a little girl. I think I would have quit that sport completely had it not been for the encouraging club members and that little voice in my head that kept telling me to continue.”

That year, Deanna continued to improve her running times and challenge herself a little more with each new competition. She completed her first triathlon in July 2011 in Blue Ridge, GA, finishing 2nd in her age group, 8th overall. The following month she came in first in her age group at the Peachtree City Sprint, then First Place Overall Female a few weeks later at the Callaway Gardens Triathlon. After the triathlon season ended, she ran the Peachtree City Classic 15K, a race that she remembered from growing up here, but that always had been too intimidating for her to run.

“I crossed the finish line 1st Overall Female and spotted my mom overcome with joy, which turned me to tears as I walked up to give her a hug,” Deanna remembers. “All the emotions of the past few years got caught up in my throat. I reflected on how life took me around the country, but now I returned to where it first began, across the street from Huddleston Elementary school, the Fredrick Brown Amphitheater, and the BMX track that my husband’s father helped build back in the early 80’s. I also realized in that moment that I loved running and needed it to be myself, not all consumed with life as a mom of a child with severe special needs.”

Deanna also found inspiration in local Christian artist John Waller, whose song “While I’m Waiting,” included the lyrics, “I will run the race even while I wait.” For many months, those words would ring in her head as she went out for a run. “With the past three years of sleepless nights, the worry and struggles or raising my little Angel, I felt the need and calling to take those lyrics to heart,” she says. “What’s unfolded since then has been an amazing journey of hope, faith, and self-discovery.”

The 2011 Race for Riley, Miles for Smiles teammates. Deanna McCurdy, Lene Ladefoged, Linda Bauer, Cheri King, Mary Manthey and Laura Bender.

Acting on her desire to make a difference, Deanna began a charity running team, Team Miles for Smiles, in January of 2011. Over the past fourteen months, they have grown to over 75 members, many local, but also as far away as New York, Texas, Colorado and even Australia, thanks to social networking and internet technology. They have raised over $70,000 for the Foundation for Angelman Syndrome Therapeutics (F.A.S.T.), a non-profit-organization whose sole purpose is to fund research to ultimately cure Angelman Syndrome.

“Deanna makes life look simple to outsiders looking in, but her days are extremely hectic, with barely a moment to breathe, eat or sleep,” her husband David remarks. “Her job is full-time: raising the children and working with Miles for Smiles, getting Hayden to multiple therapies, volunteering at both schools, going to the kids’ events and games, not to mention doing training when she can for some of the goal races. And after all that, I still can’t outrace her! That’s inspiring.”

Nora Elwell, Deanna’s longtime friend and Miles for Smiles teammate, agrees. “As a friend, I’m inspired by her positive energy, humble nature, and kind heart. As an athlete, I’m inspired by her to set goals for myself to be a better runner and triathlete. It’s easy to make excuses as to why I can’t go exercise, but when I think of all that Deanna does in a day, and yet she still finds time for exercise, my excuses seem ridiculous.”

Finally, last September, Deanna set two goals: to raise $3000 for F.A.S.T. and to do it by competing in her most difficult race to date, the Half-Ironman Augusta 70.3 race. She would swim 1.2 miles, bike 56 miles and run 13.1 miles for her sweet little Hayden—and for herself, too.

I spotted my husband sporting his Miles for Smiles shirt all along the downtown Augusta run course, taking photos. Once I even saw him holding Hayden’s hand while she was attempting to walk. I remember beginning to repeat Philippians 4:13, “I can do all things through Christ who gives me strength.”

David, Deanna and Hailey (age 6) at Tri the Mountains Sprint Triathlon in Blue Ridge, Ga. David and Deanna competed in the triathlon. Hailey raced in the kids race.

This mantra willed my legs to carry me through the final miles of the race. I crossed the finish line in 4 hours, 52 minutes, learning only later that I placed 2nd in my age group and was the 5th Overall (non-professional) Female. I earned a spot at the Ironman 70.3 World Championships in Las Vegas next September. And over 40 people had donated to my fundraising, surpassing my original goal of raising $3000 by over $4000 more.

Deanna’s goal for Team Miles for Smiles is not only to continue raising money to fund research, but also to encourage people to set a goal that they once thought impossible and help them reach it. “I have been blessed to see parents of children with Angelman Syndrome cross the finish line full of smiles and tears themselves, friends and neighbors finish their first 5K, triathlon or marathon,” she says. “I think I am almost as excited as they are when they achieve their goal.”

Jaydene Reardon, a fellow runner and friend, has also noticed Deanna’s growth as a leader over the past year. “Since starting the ‘Miles for Smiles’ team in Atlanta, I’ve watched Deanna take on a mentor role and help others to reach their own personal goals,” she comments. “She stands behind each team member and motivates each of them along the way. With her own running and triathlon achievements, she’s able to inspire other busy mothers to realize that anything is possible.”

“I think part of her success in racing and fundraising comes from her just loving what she does and genuinely having fun with it,” David says. “Hayden’s condition gave her the ability to harness love and success for a greater good.”

“I don’t like planning too far ahead because life has a funny way of flipping you around, just when you think you have figured out where you are going to be and how you are going to get there.” Deanna says. I wonder what life will be like this September, what Hayden will be able to do, how many participants we will have on our Miles for Smiles team, how many goals will have been reached, and what discoveries lay ahead in the research world. I look forward to the future, and embrace every challenge along the way because I truly believe that God gave me this life, this little angel, and while I try to teach her a little about our world, she is teaching me how to fly.

Want to support or join Deanna’s team? For more information about Miles for Smiles, visit www.miles-for-smiles.org.

More About Angelman Syndrome:

Hailey and Hayden hiking at Kennesaw Mountain. Hayden didn’t really “hike”, she was in the backpack carrier, but now that she is so big, she refuses to stay in it for long.

Angelman syndrome (AS) is a neuro-genetic disorder characterized by intellectual and developmental delay, sleep disturbance, seizures, jerky movements (especially hand-flapping), frequent laughter or smiling, and usually a happy demeanor. While Angelman Syndrome is complex in its symptoms, it really is a very simple disorder, involving only one gene that affects neurotransmitter function in the brain. Dr. Edwin Weeber cured AS in the mouse model three years ago, which gives families raising children with AS great hope. He is about to begin human clinical trials of an FDA-approved drug that has reversed many of the Angelman characteristics in its initial trials on mice. Because it is a rare disorder, all research is privately funded as the government and pharmaceutical companies do not have much interest in it. The implications, however, of curing AS are far greater and could ultimately help develop therapeutics for conditions such as Alzheimer’s and Autism as well.



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