BronaName: Brona Kearney

Age: 27 years old

Where do you call home? Dunlavin, IRELAND.

Education/Work: I have a Diploma in Applied Taxation, a BA (Hons) in Accounting, a Masters in Accounting and a professional qualification of a Certified Chartered Accountant, i.e., ACCA. I am currently doing my professional qualification of a Chartered Tax Advisor with the Irish Tax Institute.

Where do you live? I still live with my parents.

What's a typical day for you? I work four days a week. So a typical workday is I get up[7:00], dressed, eat[with the help of my parents], and I then drive to work [7:45], which takes roughly an hour to get to (depending on traffic). Once I'm at work, I usually stay there until about 6:00 when I drive home. I arrive home about 7:00 when a personal assistant [homehelp] meets me to assist me in getting out of the car and preparing my dinner. The personal assistant normally stays until 8:00. In then go to my desk and do an hour or two studies before bed at about 10:00. When I'm not working, I'm heavily involved with horse riding and weekend classes for my professional tax qualification. A weekend day is usually spent about 4/5 hours with horse riding activities, and the rest of the time is for studying and general work.

How long have you known you are living with FA? I was diagnosed with FA in 2002, so 17 years ago, when I was 10 years old. My older sister and I were diagnosed with scoliosis in 2000. My older sister had scoliosis surgery in 2001 but didn't recover as expected, leading to her being diagnosed with FA in 2002. Due to this and the fact, my parents already knew I had scoliosis, I was diagnosed with FA later that year in 2002.

Describe your transition from walking to walker/wheelchair: Currently, I use a posterior walker and a manual wheelchair to get around. I tried to walk on my own for as long as possible but in 2012 I had to move to a wheelchair and posterior walker. A more recent change I have had to make is moving to hand controls in the car. I started driving in 2009 in a manual car, but I soon found this too difficult, so during 2009, I moved to an automatic transmission car. Using the pedals has become increasingly difficult, so in 2018 I moved to using hand controls in the car. I found the change hard to adjust to and also expensive due to the cost involved in putting in the controls [which was more upsetting than anything].

What do you like to do to stay active and what type of exercises work for you to stay strong? I ride my horse at least 3/4 times a week, riding at least 4 miles on the given day. I have a personal trainer at the gym, which I visit once a week for 1 hour at a time [usually before work]. I use a posterior walker at home and at work to encourage me to keep as mobile as possible. [sometimes I ride a trike but not too much as I find it quite difficult]

Brona collageDo you have any hobbies or special interests? My special hobby is horse riding. I started this when I was 7 years old but not religiously until I was diagnosed when I was 10 years old. I got my own pony at the end of 2002 and still have him to this day. I have done a bit of everything on him, but in the last 6 years, I have stopped jumping on him as I am no longer able for it. I still hunt him, go trekking, hacking, and endurance riding. I enjoy education as it makes me feel good about myself, useful, knowledgeable and it is something I can do like everyone else as FA doesn't affect your brain.

What is a good trick to make daily life easier? I don't think about FA in my day to day life like that. Yes, it makes things more difficult, even sometimes impossible, but I try to think about what I can do and how I can do them.

When FA gets you down, what do you think/do to feel better? I talk to someone about it usually and try to do something that I feel I'm either being useful doing or makes me feel like I have achieved something from.

What is one way living with FA has POSITIVELY affected your life? I think it has helped my outlook on life and made me look more closely at what is actually important. It has also helped me to see the good in other people and see how even strangers just want to help.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Do what feels right to you at the time. Don't feel pressured to join the FA group if you don't want to. I found it took me a long time to fully process everything FA meant, and I feel that time my family gave me was important for me personally.

What is the first thing you want to do when a cure/treatment to FA is found? I don't actually know, currently, my family helps me to achieve most things. The thing I most look forward to is the independence it will give me and the additional sense of achievement I will then have.

"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 feel it means FA is a disease I have, but in spite of having this disease, I can still achieve so much. I don't think of adversity; I just think of what I want to do and how I will achieve it.

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