Name: Alexander
Age: 10 years old
Where do you call home? I am from Austria
Education:I have just finished elementary school
What’s your favorite subject in school? I like math very much, but I also like to draw or to do handicrafts. Sometimes, I need the help of my assistant or the help of my parents or my siblings.
What do you want to do when you grow up? At the moment I don’t know. Last year, I thought that I wanted to become a gardener, but I think this will be too exhausting for me to work when it is hot or cold outside. I just finished elementary school so I think there will be enough time to think about what to do in future.
Who do you live with? I live with my parents, my brother, and my sister.
What’s your favorite memory with your family – maybe a holiday, vacation, or funny moment? I like holidays very much — we often make short trips. My favorite vacation was last summer’s holiday with friends in Croatia for a week, because I enjoyed collecting seashells. I also liked our short trip to Tirol last autumn.
What’s a typical day for you? I wake up at about a quarter past seven and have breakfast on our sofa, where I also can chill for about half an hour. Then I get dressed with the help of my Mum or my Dad. Most of the time, I am very tired and need about an hour to wake up. Mum brings me to school every day by car. She takes my school bag, helps me to put on my shoes and brings me to my seat. I attend a private school. The school is very small — so I can walk most distances by myself. In school, I have a personal assistant who writes for me. After school, my Mum takes me home. I have lunch and then I can relax on the sofa again. After an hour, I do my homework, play in the garden, drive my new therapeutic bike or I have therapy lessons. I always need to relax during the day because I get exhausted very fast. I have dinner before I go to bed at about eight o´clock or half past eight.
How long have you known you are living with FA? I got the diagnosis in April 2024 when I was 9 years old, but my parents have helped me for many years, because I can not do many things so easily. It was difficult before we got the diagnosis because there was a lack of understanding. Shortly after the diagnosis I got a wheelchair. I can go little distances for about ten to fifteen minutes, but with the wheelchair it is possible for me to participate on our trips and it is not as exhausting as without the wheelchair and I have much more fun.
Are there any others with FA in your family? No, there are no others with FA in our family.
Do you have any hobbies or special interests -OR- Do you have a favorite activity? I like to ride my new therapeutic bike and swim in our pool. When it’s cold outside I like to play Lego, Kapla, Playmobil and many others. I like to build big cities with all these things. Of course I also like to play computer games.
What do you want other people to know about FA? I am exhausted very fast and all things I do take more effort for me than for healthy children. I want to do all things other children like to do, but it takes longer and in many cases I need help.
Your Name(s): Marion and Oliver
Relation to FA patient(s): Mum and Dad
What quality or trait has been brought out the most in Mom and Dad despite living with FA? We have a large family and we always stick together, so we really appreciated that in this case the family was always on our side and that Alexander is integrated so well into our family. Within our circle of friends, most of them surprised us in a very positive way. The worst thing for us was to not know what is wrong with Alexander and so many people thought (and some of them even said – among them also a medical doctor) that we as parents are hysterical. After the diagnosis, it was obvious that it was not hysteria. We wished to be wrong but now we know we were right. One of our new qualities is that it is not important anymore what so many of the other people think — most of them not knowing which way we had to go and which way we will have to go. But on the other hand we found outstanding people in so many different fields: medical doctors listening very carefully to what we as parents had to say, willing to work hard for a diagnosis and willing to provide Alexander with all the medical support necessary; teachers integrating Alexander in a new school class in such a positive way and willing to support him to find his self-confidence again; people from the authorities willing to find a way for Alexander to attend a grammar school next year supported by a personal assistant; and finally all the outstanding people from the FA group ‘Friedreich Ataxie Austria’ giving us so much emotional support and a positive view of our future. Thank you so much Jakob, Esteban, Eva, Maria and Bernie!
What did you find was the best way to discuss the diagnosis with him? We decided to be very clear and honest from the very first day to our social environment. We try to talk to each other and encourage Alexander and also the siblings that they should ask questions. We met other patients and FAmiliese. Sometimes he is sad and then we talk in bed till he can sleep and we tell him that we all will go this way with him and that he will not be alone.
What advice would you give to other Mom and Dads whose son is newly diagnosed? Speak to other people affected by FA and also talk about the disease. This is the only way other people can understand the problems in connection with FA.
How has he inspired your life? Alexander is a smart boy with a big heart. Although he has this disease, he always takes care of others and helps, if it is possible for him.
How have you been encouraged for his future living life with FA? Our family decided to go the way together. We will not give up, we will fight together—the most important encouragement and inspiration we have received from the Austrian FA-community!
What is one way FA has POSITIVELY affected your life(lives)? It is a way to reflect on one’s own life and so it can be a chance to live much more consciously.
Interview By
Jakob Mitterhauser