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Hayden McCurdy - The source of inspiration for Team Miles for Smiles

HaydenPhoto

Hayden Grace McCurdy has a smile that will light up a room.  She has never met a stranger and will draw a person into her world through her happy spirit.  Yet this little 5 year old has battled more obstacles than most adults.

Severe reflux caused Hayden to struggle with eating and breathing issues throughout her first year of life.  She suffered developmental delays and constant sickness, yet her pediatrician dismissed it, feeling her issues would resolve by the age of two.  Fortunately for Hayden, her physical therapist urged us to see a neurologist she highly respected.  Within minutes, the neurologist identified Hayden’s happy demeanor as a possible sign of her soon to be confirmed diagnosis.

Hayden, like all angels (as we call our children with Angelman’s Syndrome), can not speak.  She struggles to learn even basic sign language because of her processing and lack of fine motor coordination, yet her deep blue eyes can convey a thousand, usually playfully happy, thoughts.

Hayden began walking independently at age 3 1/2 and can get around but with an altered gait pattern.  She often opts to sit and scooch but will definitely get where she wants even if it costs a whole in her jeans.  She likes learning things the hard way, with her own unique style (when she was younger, she learned how to sit up from lying on her back by doing a full abdominal crunch rather than using her arms to help).  She is a curious little girl and because of her silent nature, you usually don’t know what she is getting into until a loud crash is heard.  Almost nothing is out of her reach or curiosity and therefore precious items have been removed or raised to a higher level.

Hayden sees the world though a pure innocence.  She loves people, music, dancing and life.  For those who meet her, they know they truly have been touched by an angel.

 

Deanna McCurdy
Coach and Angel Mom Follow the Blog
http://deeruns.blogspot.com/

 

Dee Race

So, why run, why triathlon, when my current days and nights are already full raising two daughters, one with this severe neurologic disorder?  I do it because I am determined, a fighter, and I hope through my goals and actions, I can not only raise money to fund the upcoming clinical trials, but I can inspire other parents who struggle daily, whether because they have a child with a similar condition as mine, or they have a life that has turned out differently then they once dreamed.

We moved back to both my husband, David, and my childhood hometown of Peachtree City, Georgia with our girls in December 2009.  Soon after we joined our local running and triathlon clubs, looking forward to getting involved and giving back to the town which gave us so much.  Dave and I were far from triathletes and the thought of swimming in a lake sent shivers up my spine.  I struggled through panic attack upon panic attack each time I attempted to swim in Lake Peachtree, our local lake, remembering the water snakes 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 that little voice in my head that kept telling me to continue, feeling that my struggles were part of a bigger plan.  I completed my first triathlon July 2010 in Blue Ridge, GA, finishing 2nd in age group, 8th overall.  The following month I came in 1st in age group at the Peachtree City Sprint Triathlon, then 1st Overall Female a few weeks later at the Calloway Gardens Triathlon in Pine Mountain, GA.

My own personal goal in 2011 was to raise money and complete my first ½ Ironman distance triathlon, Augusta 70.3.  I began training in January 2011 and God began to test my strength almost immediately.  Hayden suffered constant seizures for almost a month in January after battling a 4 week sinus infection.  My husband, who is in the financial industry, went through several job changes as well during the year.   When I entered the water for the Peachtree International Triathlon in May, my first international distance tri consisting of a 1500m swim, 25 mile bike and 6.2 mile run, it was almost a relief.  Finally I was doing something that I realized I loved in the town that I called home.  Our Miles for Smiles team was in charge of a water station on the run course of the triathlon.  When I approached them, I was overwhelmed by the number of supporters we had there, sporting their bright blue Miles for Smiles shirts, all cheering and encouraging.  I crossed the finish line and learned that I finished 2nd Overall Female, only 5 seconds behind the winner.  In August, I raced the PTC Sprint tri again, again finishing in 2nd Overall, 10 sec out of 1st.  It was such an honor to be part of the largest Sprint triathlon in the Southeast.

I finally raced in my personal goal race, Ironman Augusta 70.3 September 21, 2011.  I spotted Dave sporting his Miles for Smiles shirt all along the run course, taking photos and even saw him holding Hayden’s hand while she was attempting to walk (Hayden, 3 ½ at the time of the race, took her first independent steps only a few weeks before, but was still quite wobbly).  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 September of 2012!


Hayden, like her fellow angel friends, works so hard every day to accomplish things that many take for granted.  The sport of triathlon for me is similar to our journey with Hayden.  I am not a swimmer, and have to work so hard find my way in the water, trying to swim in a straight line.  Some days my head is barely above water.  Other days though, I begin to feel like I know what I am doing - then out of nowhere a wave hits me in the face when I am about to take a breath!  Life can be incredibly tough, but the shore is just ahead and we will keep pushing forward until we get there.

I look forward to the bike section of this racing journey with Hayden -working hard, peddling up and down the hills.  Biking for me takes a lot of time.  It is long, tedious, hard work, but fun and rewarding, esp. flying down the hills!   I relate this to the time - hopefully soon - when we get to teach Hayden how to speak with words, how to read and write and play  - just like her peers.  It is not a question of "if" AS will be cured, but rather "when" it will happen for our children.  That “when” is directly related to our efforts of encouraging others to set goals, personally and with fundraising, and cross as many finish lines as they can to help us fund clinical trials so we can all cross that ultimate finish line.

The final leg - the Run!!!  How I love the run!  Running is part of who I am and have always been - a talent God gave me that until now, I didn't fully understand the gift and its purpose.  I can not wait to share the run with Hayden and watch her fly!  I am sure once she starts running, she will never stop!  Such an amazing story and life she will have to share with the world.

I am truly grateful for my family, my abilities, and for the life God has given me.  This life is not easy by any means, but my “secret” is one that any Angel parent can relate to.  I have learned how to dig deep, much deeper than I ever imagined I could and accomplish so much more while appreciating every little step of the way.  While I thought crossing the finish line in September of 2011 was an end of a goal, I discovered that it was just the beginning.  Since then, because of that little girl, our family ventured to Glenwood Springs, Colorado to run the "Mountain to Valley 10 miler" for the Foundation for Angelman Syndrome Therapeutics (F.A.S.T.) a race put on by another Angel mom, one who I have become life-long friends with.  I had the opportunity to race with the best triathletes in the world at the Ironman 70.3 World Championships in Las Vegas, ran a Personal Record 5K of 17:10 at the Santa Hustle 5K in Chicago while attending F.A.S.T.'s 2012 Gala, and not only finished the Snickers Marathon March 2, 2013 in Albany, GA in 3 hours, 8 minutes, but earned $2000 for my angel and all angels by placing 2nd Overall Female.  Even more recently than that on September 22ncompeted in the XTERRA National Trail Running Half Marathon National Championship in Ogden, Utah placing 6th overall - missing 4th by a mere 44 seconds (behind 3 Olympians, a professional trail runner for INOV8 and the California State Champ).

Personal records and finish lines are wonderful to add to the race resume, but for me, that is not the real story.  The real story begins with my journey of personal growth, trusting God that He has a larger plan for me and that my talents are to be used to not only glorify Him, but to bring awareness to Angelman Syndrome.  Hopefully, I will have the strength to be a good mom, to fight for my children, to inspire others, and live each day in Hope that my precious baby girl will one day tell me she loves me with her own voice.  That will be the most glorious reward and finish line.