‘I was very clumsy in school, and it became even worse in later years,’ said Kelly.
‘Anxiety hit me every time we had an event in the school gym because I was terrified of the stands outside. It got to the point where my parents would let me stay home if we knew about a school assembly in the gym.
‘I always had to tightly grasp the railing when going downstairs for fear of falling and I had difficulty walking while holding a full glass of water or mug of coffee.
‘I tried to avoid walking in front of people who were sitting and watching because it made me nervous.
‘I’m sure my parents and friends noticed it more than me, but since I wasn’t able to watch myself, I only know what made me nervous and what gave me trouble.
‘FA is progressive, so at first, I just had some issues with balance and being clumsy. Now, nearly eight years later, I depend on a walker and a wheelchair for longer distances.
‘When I was diagnosed, I felt partial relief because I finally had an answer and realised it wasn’t my fault I wasn’t getting better. The other part of me sort of left my body, and I blankly accepted the information. I was upset, of course, but mostly, I couldn’t believe this was happening to me; it was surreal.
‘My walking worsened and walking longer distances across my university campus became increasingly difficult. I was exhausting my body trying to keep up with my peers.
‘When the weather is nice and my friends and I want to go to the park or a nearby bar, I use my wheelchair about once a week.
‘FA has stopped me from being able to do certain things, but I don’t focus on that.
‘What it prevents me from doing doesn’t really matter in life – I have many friends who go out on weekends and bar hop all night. Occasionally I feel down that I can’t join them, but then I take a step back and think about how I’m still living a fulfilling life without doing that.’
Alongside completing a postgraduate course and living independently, Kelly runs a blog, My Darling Life With FA, to educate people about Friedreich’s Ataxia.
‘I’m fortunate to be surrounded by kind and supportive people, so gladly, I’ve never received negative comments,’ she says.
‘However, in university I had some negative experiences with advisors. They didn’t say anything specific about my condition, but made it clear I wasn’t supported in battling FA within the program.
‘I definitely don’t think enough people know about FA. Unless they’re a doctor, I can almost guarantee someone I meet for the first time has never heard of it. Greater awareness is so important for funding research to find a treatment or cure for FA.
‘Through blogging and being so transparent on Instagram, I’ve connected with many like-minded people who are dealing with similar challenges. I’ve built a little community.
‘It’s also helped me find purpose in supporting others through FA, rare disease, chronic illness, or disability.
‘I want others to see that it is possible to live a life full of love, happiness, and passion when you have FA, disability, rare disease, or chronic illness. It’s what I needed to hear when I was diagnosed at 18 and will hopefully help others.
‘I have plenty of other interests, such as style, travel, design and photography. I want to show all of this, because I think it’s important for others to see, even if their interests differ. Your life doesn’t have to revolve around your condition.’
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