Robert Manuka Name: Robert Manuka

Age: 35

Where do you call home? I live in a sea city called Durres, Albania

Education: I have finished High school

Who do you live with? I live with my wife and my daughter

What's a typical day for you? I like to read books

How long have you known you are living with FA? I was diagnosed with Friedreich Ataxia in 2002 after I took the genetic tests.

Are there any others with FA in your family? Yes, my two brothers also have Friedreich Ataxia

Describe an adaptation and/or transition you have had to take due to living with FA. When I was first diagnosed, I used crutches, then a walker. Now, I use a wheelchair.

What do you like to do to stay active and what type of exercises work for you to stay strong? I like to talk about social subjects

Do you have any hobbies or special interests? I used to have a hobby but not anymore.

When FA gets you down, what do you think/do to feel better? Spending time with my daughter makes me feel better. A person gets tired of being sad because of FA; that’s why I don't think about it anymore.

What is one way living with FA has POSITIVELY affected your life? The friends that I know, I met because of FA.

What is a favorite motivational quote of yours? Never give up.

What is a piece of advice that someone with FA has given you that encourages and inspires you? Always stay positive.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Take it easy because there is not the end.

What is the first thing you want to do when a cure/treatment to FA is found? I would cheer up and I would say 'This was it'

“I have FA, but FA doesn’t have me.” What does this statement mean to you? To me, FA is cruel.

Tell us a little more about you... I am emotional, I cry easily.

Interviewed by
Interviewed by Xhesika Peza