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FARAFARA Cure FA

Alyx Holliday

Name: Alyx Holliday

Age: 18

Where do you call home? Virginia Beach, Virginia

Education: I am currently a senior at Salem High School in Virginia Beach. Class of 2015!

How long have you been living (or known you are living) with Friedreich's Ataxia? I found out I had FA when I was five. My family noticed my motor skills were not where they should be, so after a year of testing, a genetics test told me I had FA.

Do you have any known family history of Friedreich's Ataxia or similar symptoms? My family thinks my great great uncle had FA. He was in a wheelchair and had a heart condition.

Describe your transition from walking to walker/wheelchair. My transition from walking to walking with walker/wheelchair was tough for me since I had not had use a device for 14 years. I fought hard to stay on my feet. I played baseball until age 14 even though I was so young when I got the diagnosis. But at 14 I needed the spinal fusion surgery, and although I walked in, things didn't go as planned and two months later I wheeled out. What do you like to do to stay active and what type of exercises do you do to stay strong? My school district doesn't require PE after 10th grade but I kept adaptive PE as an elective to help keep me active. My teacher works with the PT and he is a coach so it's great. I have that anywhere from 2 to 3 times per week. I ride my recumbent bike. I also do a series of yoga routines a couple times a week.

What's your most comfortable pair of shoes to wear? I'm a Vans guy - they're comfortable and trendy.

What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? I've been able to meet a lot of great people who also have FA. FA has also taught me about strength and what's important in life - like family and friends.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? No matter what you are going through there is always someone who has been through the same thing, so don't be afraid or shy. Reach out. Ask. Talk to us. We've been there and we get it like no one else can. You're never alone!

What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? The first thing I want to do when a cure/ treatment is found is get back to playing baseball again. You'll find me on that baseball diamond. It's going to happen. image"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? I have FA but FA doesn't have me means that you should always live life to the fullest. I face adversity by living my life day by day. Have a plan B, but don't give up on A. Me, I always wanted to be a ball player. Right now that's not an option. I'm going off to college to be a sports journalist. But I'm staying strong so when that cure comes the Yankees won't want to pass me up.


We are stronger together! Find a new "Meet the Community" interview every Monday. Stephanie

 


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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