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FARAFARA Cure FA

Lauren Williams

Lauren I was diagnosed with FA around the age of nine and since then I sure have been through a lot!

FA was barely noticeable, but I remember friends asking me what was wrong? I still remember explaining what it was and that it was going to get worse to my science lab partner in 7th grade. He chuckled and said "Wow, I'd kill myself if I were you!" I tried very hard to brush it off and pretend I didn't care, as I always did when a friend would make a comment making fun of the way I walked "funny" or talked slow. My fatigue would even show and it seemed everyone made it a point to make fun of how tired I looked. 15 years later and I still remember, but I'm thankful to have let go of that anger. People around me simply did not understand my situation. I can't even say I understood it. To this day, I'm happy to call my lab partner from 7th grade a friend, whom I believe is a great person.

By the time I reached high school, my disease had progressed to the point where it was pretty obvious that I was having a lot of trouble. I always watched my older brother out there on the baseball and soccer fields and wanted to be one of the players out there under the lights. It was a joy to be part of a team -- really, it was my only joy at that point, so I decided to be a statistician for our high school's ladies soccer and softball teams. It still wasn't enough. My disease was progressing, I was scared and confused, struggling with depression. I don't think I ever resembled a hardcore party animal, but was accused of coming to school drunk or on drugs several times by other students and even teachers. It was all so much to deal with and I was too ashamed to talk to anyone about it. I decided to go on home schooling and I barely left the house except to hang out with my older friends. They were out of high school, and I think my parents just wanted me to have some social interaction, so they allowed it. They had no idea what I was up to, putting myself in bad situations that were not appropriate for teenagers. The typical depressed girl outlet. But my friends didn't look at me as the diseased girl and at the time I needed that.

I still wonder how I came to the decision to go back to school my senior year..and my first time using a wheelchair at that. But it was the first step down the path that I am on now and I am so glad! I revved up the courage to get out of my wheelchair and walk across stage to get my diploma. I got a big ovation from everyone. My family was in tears and other people talked about how inspirational it was to see, but I remember simply being happy. This was the first time I truly felt I was winning my fight.

I am 26 now and live in my own apartment and get around by bus as I no longer drive. I finished college at UMBC and volunteer under the county executive for the Commission on Disability Issues. I'm into a lot of adaptive sports and just won the AAI grant for a handcycle this past year. I have a few good friends and go out and do a lot of fun things! Being a part of FARA has opened my life to new possibilities and brought me to find the close friends that I never had in the past. Living with FA is still quite a struggle, but I am finally in a good place in my life and able to put up a good fight ;-)

I love to meet new people and will help anyone in anyway that I can!

Lauren

 

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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