Name: Valbona Ferati
Age: 34 years old
Where do you call home? Kosovo
Education degree(s): High school, three years English language course.
Who do you live with? My parents, my brother, and my sister. I have two other sisters who don’t live here.
What’s a typical day for you? I wake up at 11 o’clock, I ride my recumbent bike and have coffee. I am wheelchair-bound, so my mother gets me out for a ride in the city. When I don’t go out, I read books, especially romance. When it’s evening time, I watch the news on TV, then any TV programs shows. Netflix is my best friend each night from 10 pm till 1:00am. Oh, I forgot to mention the telephone and internet.
How long have you known you are living with FA? 2008 is the year when doctors told me in Belgrade. In 2010, in minutes it was confirmed by Innsbruck Medical Hospital, due to DNA test and blood analysis.
Are there any others with FA in your family? Yes, one brother and one sister. So, we have three members of my family affected with FA. My two other sisters don’t have FA. One of them is happily married and has two kids.
Describe your transition from walking to walker/wheelchair. Well, I would say it was progressive. From the age of 14, I was having many more complaints like tiredness, insecurity, frustration. At the age of 22, I used a wheelchair only for outside. After two and a half years, I started to use it full time.
What do you like to do to stay active and what type of exercises work for you to stay strong? I ride my recumbent bike, of course, together with good music. I become happy when I hear about the latest researchers which are getting near to a treatment of FA.
Do you have any hobbies or special interests? Reading and fixing the equipment at home.
What is a good trick to make daily life easier? Riding in nature, riding in the car.
When FA gets you down, what do you think/do to feel better? Conversation far away from FA, TV, movies, social media.
What is one way living with FA has POSITIVELY affected your life? Patience
What is a piece of advice that someone with FA has given you that encourages and inspires you? Three years ago, there was a training for disabled people, which was organized by HANDIKOS organization, where I met a boy who had FA like me. I started talking with him about FA. I had never met someone with FA before him. He was very optimistic for the treatment of FA (It’s only a matter of time, he said to me). His positivity has affected me even in hard times.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? The researchers will find the cure for FA. I know that they are doing huge work. Be courageous and don’t give up.
What is the first thing you want to do when a cure/treatment to FA is found? I will celebrate endlessly! I will travel a lot.
“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? The brain controls things, not circumstances. Change is special. Being special is unique.
Interview by
Xhesika Peza