Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

FARAFARA Cure FA

Preston Lynch

Preston (in the driver's seat) and his friend, Wesley Preston (in the driver's seat) and his friend, WesleyName: Preston Lynch

Age: 21

Where do you call home? South Texas

Education: I am currently going to college at Texas A&M University - Corpus Christi. I am a junior studying for a bachelors in education.

How long have you been living (or known you are living) with Friedreich's Ataxia? When I was 12 my parents noticed that I was uncoordinated and took me to a pediatrician. He had an idea of what was wrong but he wanted to be certain and that's when the blood tests started. Two weeks later I found out I had FA.

Describe your transition from walking to walker/wheelchair. I was extremely stubborn about using a wheelchair. After I was diagnosed I walked for the next 4 ½ year but the last year was very difficult. During my freshman year of high school I went to Disney world with my family and I got tired a lot so I used my wheels a few times even though I hated them. I sprained my ankle during my sophomore year in high school and I was forced to use a wheelchair for a month. By the time I used the chair for the second time I realized that it made my life way easier, so I decided to go to a wheelchair full-time right before my junior year of high school.

What do you like to do to stay active and what type of exercises do you do to stay strong? I was on the swim team all through high school. Most of my life revolves around water so every now and then I’ll go swim laps if I feel like I’ve been lazy or if I need to blow off some steam. I also, recently started physical therapy so I am able to get stronger while having fun.

What's your most comfortable pair of shoes to wear? I don't know if my feet are abnormally wide or if all FA feet are wide, but I love the extra room of wide shoes. They feel much better on my feet.

What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? Living with FA has taught me who my real friends are. After I went into a wheelchair full-time some of my friends abandoned me. But, I also gained new amazing friends. I am happy I found out who my fake friends are because nobody needs those.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? After you get diagnosed you’ll start to notice that you lose the ability to do things that were easy before. My advice is to start looking at things you can do; not things you can’t do.

What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? The first thing I will be doing is playing baseball all day.

"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? To me it means that even though I have FA and it makes things hard it doesn’t make things impossible. I try to live with a smile on my face. If I’m upset that I have FA then I’m never going to be happy

Jeannie's Note: Preston has recently undergone tendon release surgery, which is very courageous. Here's what he has to say about this experience...I had to have one foot done at a time, so it took all summer. The first 2-3 days sucks and then the next week and a half is hard but manageable and then it was easy sailing. It only hurts if I have it down in a dependent state for too long, but other than that it was okay. I had an external fixator on my right foot for seven and a half weeks and my left foot for six weeks. Each one had five pins going all the way through the foot and one big pin attached to the shin. it sounds extremely painful and at first it is but you get used to it. Once you’re done the doctor will put you in a cast for two weeks and then a smaller splint wrapped in an ace bandage. At that time you’ll get molded for an AFO (ankle to foot orthotic) brace, after you get the brace you're done with that foot.


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

 


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.

 

More articles from this author