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FARAFARA Cure FA

Ashlea Smith

Ashlea SmithMy name is Ashlea Smith, and I was diagnosed with FA at 16 in 1998. I'm 35 years old and live in Aliquippa (20 miles west of Pittsburgh) with my husband, 13-year-old stepdaughter, 5-year-old son, dog, and 2 cats. I work part-time for a nonprofit organization that serves children and families in the local area.

I began showing symptoms such as loss of balance and coordination at the age of 14, and it became most evident in activities that I had previously excelled in such as cheerleading, dance, gymnastics, swimming, and softball. After my diagnosis, I was able to finish high school without really confronting too many obstacles of the disease. My family and friends were integral in getting me through those years. I started having more trouble with my mobility throughout college and really struggled with how to come to terms with what was happening to my body. I pushed so hard against using any kind of mobility aid and tried desperately to keep my independence.

I started using my first wheelchair in 2004 when I was 22 years old. This only drove me to live as "normal" of a life as I could. I know now that the word "normal" is a completely subjective term and carries little weight in evaluating my life experience. But as a 22-year-old, anything that helped me find some level of normalcy was welcomed with open arms. I met my husband in 2005, and we got married after dating for 3 years. He has helped continue my dream of leading a happy and fulfilling life. After receiving my Bachelor's Degree in Psychology from Robert Morris University, I decided to further my education at Indiana University of Pennsylvania. I received my Masters of Education Degree in School Counseling in the Spring of 2012. It was a busy year for us. I also gave birth to our son in August of that year. It's been a whirlwind of ups and downs, but a lot of laughs along the way. My life is anything but "normal," and I'm okay with that because it is filled with a loving family and supportive friends that continue to encourage me as I navigate this crazy life with FA. That is by far more than I could ever hope for.

"And now these three remain: faith, hope, and love. But the greatest of these is love."
1 Corinthians 13:13

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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