Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

FARAFARA Cure FA

Damaris Eunice Seballes

Screen Shot 2019 07 19 at 2.33.59 PMName: Damaris Eunice Seballes

Age: 21

Where do you call home? Texas

Education degree(s): High School Diploma & some college

Who do you live with? I am currently in a relationship, which we are taking serious. I do not have children nor do I really want any. DON'T GET ME WRONG, I adore kids, but I don't exactly see being a mom in my future. As of now, I live with my mother and siblings. Although, hopefully in the near future I'll be able to decorate my own house.

What is a typical day for you? A typical day for me is binging Netflix, eating, shower, playing interior design games, and cleaning. I do occupational therapy (which I love) and my appointments are twice a week. My siblings and I recently acquired a puppy. I sit outside with her almost every day.

How long have you known you are living with FA? I was diagnosed with Friedreich's Ataxia since I was about 9 years old. Growing up, I had never heard of FA, Mom and I decided it was just clumsiness that accounted for falling a lot. After being hospitalized for a severe fever a heart murmur was identified, which eventually led to an FA diagnosis.

Are there any others with FA in your family? I am the only person with FA in my family.

Describe your transition from walking to walker/wheelchair. I use a manual wheelchair at all times because I have absolutely no balance to be able to walk even with assistance. It was hard when I made the transition especially because it was during high school. I was very insecure about the transition, however, I now love being "the girl in the wheelchair," it makes me feel unique in my hometown.

What do you like to do to stay active and what type of exercises work for you to stay strong? I enjoy lifting weights and playing catch with my therapist. I enjoy challenging myself with table games and making crafts. I've noticed that doing things on a consistent basis with arm muscles makes my transfers easier.

Do you have any hobbies or special interests? My interests and hobbies change very often, but as of now, I really enjoy painting, makeup, editing my
YouTube videos, and interior designing.

Damaris CollageWhen FA gets you down, what do you think/do to feel better? When FA gets to me I let it out in the shower, I let my emotions go down the drain. Then, my mind automatically sees how lucky I am to have FA because I have unconditional help and support from
my family. 

What is one way living with FA has POSITIVELY affected your life? How can a deteriorating disease be positive, right? WRONG this disease makes me love myself for who I am not from what I sound like or the things I can do. FA humbles me down and I learned to appreciate the simple things in life. FA has also introduced me to the FA community' a network of people, almost like family, who share my struggles and encourage me to live a healthier life.

What is a favorite motivational quote of yours? "God doesn't throw any obstacles in your way that you cannot handle."

What is the best advice YOU could give to a person who has been newly diagnosed with FA? The biggest advice I can give someone newly diagnosed is, life goes on. No matter how dark you feel right now, there's always a light at the end of a tunnel. You're not alone.

What is the first thing you want to do when a cure/treatment to FA is found? The very first thing I want to do when a cure for FA is found is dance the night away!

"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, it's part of who I am. It doesn't stop me from doing the things I want.

Osama Aweek FARA Ambassador Signature


About the Author

FARA Ambassador Program

SHARE

FacebookTwitterLinkedInYoutube

 

Archived in
  the Ambassador Blog