Lily Kate Boone
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Lily Kate Boone

Lily Kate Boone

Age 10

November 20, 2009

Dear AHA,

Lily has been riding through the neighborhood and done some training with a local kid's triathlon group that her twin sister is a part of as well.

It has given her so much freedom to be able to ride with her friends. She feels like a regular kid.

We appreciate so much, what you have done for Lily and other kids like her.

Jenny Boone

Dear Athletes Helping Athletes,

I just was in the National Junior Disability Championships for swimming. They gave me a new racing wheelchair to borrow. I love to compete in sports. I joined the kid's triathlon team with my twin sister. I am older by 1 minute. We are 10. I would love a handcycle so I can join the cycling part of practice and competition. I would like to ride bikes with my friends.

Thank you,

Lily Boone

Dear AHA,

Thank you so much for the opportunity to present our request for a handcycle for Lily. Lily is a kid with big dreams and goals. We appreciate your work to help kids around the country fulfill their dreams.

Who is Lily Boone? Lily is a smart, social, and happy 10 year old, ready to start 5th grade at Cunningham Creek Elementary, St. Johns Florida, this fall. Her friends see her as just one of the kids and many forget at times that she even is disabled. She is a twin and one of three girls (four if you count the dog) in the Boone household. Lily was born with many congenital anomalies and was given the diagnosis, OEIS Complex, Exstrophy and Spina Bifida. That is a lot of medical terminology to describe that many of her abdominal organs were outside her body when she was born. We remember signing several surgery consents at 1:00am and the doctors telling us we needed to do several reconstructions on the spot to put Lily back together again. Through the years, Lily has had many more procedures and surgeries to reconstruct her back, pelvis and internal organs. Lily uses AFO braces on her feet and low extremities, as well as, a walker and wheelchair to assist with distance and endurance. Modern medicine has developed over the past years, giving children like Lily a chance. Even 20 years ago, her prognosis and quality of life could have been much different. Many of these children can die of infection or other medical complications at a very young age still today. We have been blessed with great medical care and except for her orthopedic issues and some electrolyte imbalances, she is growing and healthy, but does spend lots of time at the hospital.

Lily dives into athletics in 2009
Lily's twin Elena started swimming first on a year-round USA Swimming team, the Loggerheads, here in Julington Creek Plantation, coached by Mark Corley. Lily wanted to try it and coach agreed to let her try out. Since we live in Florida, and are surrounded by water, we thought it would be a great idea to increase her confidence and safety in the water. Coach Corley has been fabulous with her, considering neither he nor his staff have ever coached a disabled athlete before. She is treated just as the other swimmers are treated, given the same workout and training regimen. Lily swam in her first meet in February 2009. At that meet, we ran into another family with a very famous Paralympics swimmer, Miranda Uhl. Miranda is 16 and holds the world's record in both 400 and the 200-meter individual medleys, from the Beijing Paralympics. When she came to meet Lily that Sunday, Lily saw that she could truly win at something too. The Paralympics and the National and Regional disability meets offer her something that she never imagined was possible, being able to swim against like-abled athletes. Her words to us were ? "Just think, Maybe I could win a ribbon some day!"

After only swimming for 3 months, Lily qualified for the National Disability Championships (NJDC). We attended the Gateway Games in St. Louis, MO in May to get Lily classified by the IPC and participate in her first disabled athlete event. Lily swam in six events and came home with five First Place ribbons and one Second Place ribbon. Since then, the Paralympics coaches in Colorado Springs have contacted us. They have put Lily in their database as an Emerging Athlete.

At the NJDC, Lily only competed in the swimming events, but came home a champion once again, winning three 1st place ribbons, one 2nd and two 3rd place ribbons. Kelly Behlmann, organizer of the NJDC and director of Disabled Athletes Sports Association let Lily try out a racing wheelchair (as shown in the pictures provided). She loved being able to run. Lily was so excited by the racing wheelchair that Kelly offered to loan her the chair until she gets one of her own. When we got home, she joined the JETS, a triathlon-training program for children. The only piece missing from her training is a handcycle. Having a handcycle would give Lily more opportunities to participate in sports, enter cycling races and triathlons. It would also give her the freedom to ride with her friends when they cycle. She is determined to qualify for the NJDC in 2010, but not just in swimming, in track and field events as well.

Thank you again for your consideration and we look forward to hearing from you.


Jennifer Boone

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