KaylaName: Kayla Louise Hellegers

Age: 27

Where do you call home? Blue Mountains, Sydney Australia

Education: Animal Studies and Higher School Certificate through TAFE.

Who do you live with? My mum, my dad, and my dog Jemmah.

What's a typical day for you? I get up early with dad before he goes to work. Most days, I undertake study, watch TV, play board games and make my own gift cards.

How long have you known you are living with FA? I was first diagnosed as a five-year-old in 1997, but I didn't really understand what it meant. It was confirmed through a blood test, which was fairly new at the time. I have very little memory of life prior to my diagnosis of FA.

Are there any others with FA in your family? No (not that we know of and hopefully there never will be)

Describe your transition from walking to walker/wheelchair. Describe an adaptation and/or transition you have had to take due to living with FA. When I was 5 years old, I had an operation on my left foot to release tendons, and the recovery set me back. I used to lose my balance a lot, so I started using a walking frame by around age 5. This was helpful for about two years until I had another operation where my ankle was broken and fused. After this second operation, I had to start using a manual chair for school. I received my first powered chair at about age 11 as I became too weak to push myself and have used one ever since.

What do you like to do to stay active and what type of exercises work for you to stay strong? I do physiotherapy on my hands and arms, and I try to get to the gym at least once a fortnight.

Do you have any hobbies or special interests? I love doing craft activities such as scrapbooking and also creating art. I love board games in general, but I particularly love playing monopoly. It's one of my favourites, and I have quite a few versions of this game. I enjoy going to the movies and cooking too. I love all types of animals and enjoy going to the zoo. I particularly love pandas and collect lots of memorabilia relating to them. I'm interested in modern history, particularly around WW2, as I have family members who were involved in this war. I go to museums, read books and watch movies relating to the topic.

What is a good trick to make daily life easier? I try to think positively, and this helps to put me in a better frame of mind, and it gives me the courage to go on.

When FA gets you down, what do you think/do to feel better? I try not to dwell on it, and I try to think positively about the things I can do and what I have.

What is one way living with FA has POSITIVELY affected your life? If I didn't have FA, then my immediate family might not have been so close.

What is a favorite motivational quote of yours? Don't dwell on the things you can't do but concentrate on the things you can.

What is a piece of advice that someone with FA has given you that encourages and inspires you? The realization that I'm not alone. There are other people going through and having similar feelings as me.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Keep up the physical activity for as long as you can. Whatever movement, you have to try to keep moving. No matter what people say, keep active for as long you can. Take one day at a time as the cure is just around the corner.

What is the first thing you want to do when a cure/treatment to FA is found? There are too many things to list, but the first thing I would want to do is to run.

"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 might have a disability called FA, but you can't judge me based on my disability. There is much more to me than just having FA.

Tell us a little more about you....I love going shopping and getting my nails and hair done. I shop both online and at shopping centres. I like a good cafe and yummy food. I like watching TV and love a good quiz show!

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