Hi, my name is Tallulah Clark. I’m 20 now but at 19 I got diagnosed with spinocerebellar ataxia, or, as some may like to call it, SCA (catchy name, I know). My SCA is actually SCAR (recessive) - also known as AOA2 - because SCA alone wasn’t enough for me!

I was diagnosed in my teens, but my symptoms were there long before - when I was a little girl. It's easy to see how it took so long for me to get diagnosed: not many people have heard of ataxia, not even my GP.

Symptoms

Ataxia for me involves a comedic tremor in my hands (honestly, I can’t even carry a cuppa), confidence-destroying mobility issues and what I like to call 'brain fog.'

When I was a child, the clues were there. I could never ride a bike; my coordination was so awful that I avoided taking part in sports: it made me feel a bit of an outsider and embarrassed. I just avoided these things. But if you gave me a pink feather boa, some over-sized tacky, plastic heals and an even tackier plastic guitar, the world would be my stage!

As I got older and my ataxia symptoms started to present themselves, I ironically started showing an interest in ice-skating, roller-skating, cycling and anything that required balance. By 16, I started going to the gym. This is when I could no longer pull off the “I’m just really clumsy” act. I was slowly but surely finding things a lot more difficult. Nowadays I go to the gym a lot, there are some exercises that I have to alter, some that I just can’t do and a lot of equipment I tend to avoid (how come everything requires balance?!).

Specialist Ataxia Centres

I’m from Bristol but go to uni in Sheffield, where there's luckily a Specialist Ataxia Centre for adults; this has been amazing and life changing. The ataxia nurses have helped set up my physio and offer an often-much needed shoulder to cry on, I can turn to them whenever. Although I am 20, I still feel very dependant on others when it comes to all this, almost like a child in some ways.

As a child with ataxia, there were no specialist centres; there was no one to tell me how I should handle all this, no one who could point me in the right direction, no one to teach me how to manage my symptoms. So I came to Sheffield with no clue about how to deal with my diagnosis, except from what Google could tell me.

An Ataxia Specialist Centre for children would have been life-changing for me and my family; mum wouldn’t have had to take so much time off work, she wouldn’t have stayed up all night worrying if I was OK; both my parents wouldn’t, because they would have had that support.

prayers and the future

So, as I’m lying on my bed writing this, I’m also praying, the same prayer that I make every night. I pray that there’s a breakthrough in research, an end to ataxia. I often daydream what life would be like without it, what I would do and how I’d really make the most of my life, because growing up I definitely wasn’t aware of how lucky I was; I never imagined that walking up a flight of stairs with no handrail could be like a near death experience!

Children should never feel like outsiders for having a rare, untreatable condition. Donate to our Big Give Christmas Challenge to support the establishment of a paediatric centre, where children and their parents can get specialist advice, information and care in how to manage ataxia. Thank you.