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FARAFARA Cure FA

Lealan LaRoche Sims

Lealan, In My Words By Katie Weir I have long looked up to Lealan’s athletic prowess. On a fall afternoon in the sixth grade, our PE class convened for the annual mile run. Lealan had a reputation for being one of the fastest runners in school and that day she did not disappoint. Lealan left me, and most of the other girls (and boys), in the dust. As we moved in to junior high, Lealan was the best at softball; with her speed she could turn a single into a standup double. I was lucky enough to have her as a tennis partner during those years. On the court she was swift, confident and graceful.

As high school wore on, Lealan continued to thrive both on and off the field. Oddly enough, we were both diagnosed with scoliosis; however, her curvature required surgery. Then one day, as we walked up the bleachers at a football game, Lealan grew frustrated. She told me it felt like her legs wouldn’t do what she told them. Did this have anything to do with her spinal fusion? It would take years of testing, doctors’ appointments and frustration before the diagnosis of Friedreich’s Ataxia (FA) junior year of college.

By far, Lealan’s greatest accomplishments have come SINCE her diagnosis. Lealan studied in Paris for her senior year at Georgia Tech, graduating with high honors, followed by two Masters’ degrees, in Architecture and City Planning. She has taken on the role of mentor and advocate with the greatest ease. Her doctors call on her to comfort the newly diagnosed and to show them that a life with FA can be full and active. She fights to improve the quality of life for ataxia patients and their families. Lealan continues to work on independent projects in graphic design and residential architecture, even advising Delta Airlines on how to improve their handicap operations.

She is every bit the champion of her youth.

Her positive attitude and drive have also made her a pillar of the FA community, inspiring so many of us. Lealan’s ataxia network is extensive and she is a perfect advocate to spread FARA’s message and mission. As my best friend, my tennis partner and my hero, Lealan is exceptionally committed to raising awareness and research funds. FA may keep Lealan from acing a forehand; but it will never slow her down. To my best friend of nearly 25 years, Katie, and my supporters,

As we tried to discover what my body was reacting to, I lost pride in myself. I had to follow a road of acceptance to earn any of my self-respect back. You helped guide me to turn my diagnosis of FA into a chance at inspiring others with (and without) ataxia.

The process of learning to cope with my disease has brought out the best in me. This hope has enabled me to be someone I never knew I could be. Your proactive stance motivates me to reach out to others to give and to gain. Of course, I gain so much more than I will ever be able to give. Thank you for your love and support as all of us fight this disease. You, along with family, friends, and the FA community, keep me strong and hopeful. I know we all have a fighting chance to cure FA!

I love you.

Lealan

 

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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