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FARAFARA Cure FA

Wenses Reyes

This Meet the Community interview was originally published in January 2015. Wenses is now a participant in the

FARA Ambassador Program.

Name: My full name is Wenseslao Reyes. I go by Wenses though. My friends call me Yayerr; a nickname given to me by my baby brother in 2007.

Age: 21

Where do you call home? I’m from Portland, Oregon. Actually, I live in Aloha. But it's close!

Occupation/Employment: I don't have a job. I'm job hunting, but I'll probably wait until I finish school. I am also looking for an internship to further my skills/experience. Right now, I attend PCC. It's a community college. I'm working on transferring to PSU (maybe) and I'm going to major in business, accounting to be clearer. I love numbers! I'm also good with money! I'll probably study personal finance too. But, who knows.

Education: As I mentioned above, I'm an accounting student that is enrolled at PCC. I am working on my required classes I have to take in order to transfer. I’m taking school slowly! There is no rush.

How long have you known you are living with Friedreich's Ataxia? I have a similar story to most of the other people that have done an interview. My parents noticed I was walking strange, I was 10. They also noticed me bumping into walls. As a kid, I didn't want to be "that weird" kid, so I denied it. Well anyway, we went to the doctors and nothing, "he's fine, it will go away." Well it didn't. At the age of 12, almost 13, we went again. Only this time, my dad started throwing tables, breaking windows, and hitting the walls (not really) but they were frustrated. We eventually got thrown out of the doctors (kidding), but they said they will look into it. We got a call month’s later saying that I should go in for testing. I was 14 when I was declared diagnosed with FA. Do you have any known family history of Friedreich's Ataxia or similar symptoms? No, I was the first, and then my sister. Hopefully we're the last.

Describe your transition from walking to walker/wheelchair. This was challenging for me! I was 16 going on 17; walking (strange) to using a walker. I remember crying so much. Hey, I was a kid! Anyway, a bond grew within my walker and me. It went Sent from my iPhone had to say goodbye to my walker. It helped me finish my senior year in high school, but it wasn’t in the best condition to help me with my next adventure. I transitioned from a walker to a wheelchair just in time for college. And no, I didn't cry! I knew I was going to like it eventually, and I did. I love my wheelchair!

What do you like to do to stay active and what type of exercises do you do to stay strong? I have a strong passion for soccer! And since I can't physically play, I started coaching an U9 team (under 9) However, I'm only the assistant coach…that was years ago, and now we're a U11 team. It's difficult to tell the kids what to do because they need a visual aid, but the kids help me out. I love coaching because it makes me feel great! Not to brag but, I’m good at coaching. I also go to the gym 2-3 a week. I like to think of myself as a strong guy. Aren't we all? I use to be able to do a lot of things at the gym, but now I'm limited to only a few. I mainly do the hand cycle because it’s a great alternative for the regular bike. It got difficult because I kept on falling to each side so we tie a belt around me. It helps a little. I work out my arms, chest, and legs. Sometimes I feel pain when doing some of these, but mind over pain, right?

What's your most comfortable pair of shoes to wear? My feet tend to hurt a couple hours after wearing shoes. Any suggestions? Do you have a diet plan you like to follow? Why? My diet plans include eating healthy. I limit myself to only a couple of junk food a month. For example, December is a month where a lot of food is made; I only ate my three meals a day, no soda, one dessert for the holidays, and no candies. I also don't drink beer. I usually try to keep my diet plans the same, but some months I do cheat! Also, my diet plan is my choice! I don't have to follow it but I choose too!

What is one way living with Friedreich's Ataxia has POSITIVELY affected your life? "Rule # 32: enjoy the little things" - Zombieland. Yes, I appreciate the little things in life like noticing when I do an extra five minutes on the hand cycle or someone offering me a snack, or noticing when your best friend painted her nails, etc. Simple things like those make me happy. I'm also very thankful that I can do things some other people can't like talk, or simply moving my legs. I also learned how to appreciate my friends more. Living with FA makes you look differently at life; It makes you feel thankful for the things you can do. It may sound like I'm repeating the same thing over and over again, but I'm not. Your family also makes a difference because having a supporting family means that you will look at life in a positive way, with or without FA.

What is the best advice you could give to a person who has been newly diagnosed with Friedreich's Ataxia? The best advice I can give is to look into FA and seek out to your FA family for advice. Don't be ignorant as I was. You have FA brothers and sisters that are here to guide you or maybe you can guide us. YOU ARE NOT ALONE!!

What is the first thing you want to do when a cure/treatment for Friedreich's Ataxia is found? The first thing that pops into my head is taking a family run, including my cousins and friends, that would be a dream come true!

"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? This is the greatest phrase I've ever seen in my life. I can't believe I've never seen this before. For someone to say "I have FA but FA doesn't have me" it has to mean they're fighting their way through victory. Until there's a cure! There is no giving up! It means you're not weak, you're strong. You’re not going to let FA win, you’re going to defeat FA. When any difficult comes through my path, I run it over with my wheelchair! I try not to let it get the best of me, and once I overcome it, I can add it to my list of accomplishments. Now, there are times when I do get sad or frustrated, but that's when my family come to my rescue. Doesn't it feel good when your overcome an adversity? It feels like you can do anything.

 


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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