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Tallulah Clark

Tallulah's 10,000 Challenge for Ataxia Research and Awareness Campaign

I am raising money to fund Research and Awareness for Ataxia UK because I was diagnosed with Ataxia AOA2 in May 2017

100 %
£10,093
raised of £10,000 target
by 178 supporters
Donate

Ataxia UK

We fund research and support services to help all those affected by ataxia

Charity Registration No. 1102391

Story

Hello my name is Tallulah Clark, I am 20 years old, thank you so much for taking the time to find out more about my £10,000 Challenge,  Ataxia, and my specific condition AOA2. (For more details about Ataxia please visit www.ataxia.org.uk) 

From an early age, my balance and coordination were not as they should have been: I've never learned to ride a bike, and even when I threw a ball it would usually end up somewhere
behind me!

I started investigations at the Children's Hospital, in Bristol, at age 11, and over the following 6 years I was seen by numerous Specialists. I was finally referred to Neurology only last October. These last 12 months have been a whirlwind, filled with appointments, tests and finally a diagnosis in May 2017.  I was given the, news  that I had an extremely rare form of Ataxia, affecting only 2 in a million people, I felt a strange mix of relief that the search was finally over, and disbelief that I really did have something wrong with me. At times it had felt as though I was just imagining it all, as all the bits of the puzzle weren't fitting together.  The diagnosis explained it all- the dizziness, the “drunk” feeling, the tripping and the coordination issues.

My mum, Olivia, has been my rock, fighting my corner for
so long. As hard as it was to hear the diagnosis, she feels at least she knows what she's dealing with now. My dad, Phil, too has been positive and supportive throughout, encouraging me to keep fit and eat well. And my dear sister Maddie has been my quiet confidante during the times when I didn't know where to turn.


In September I moved from home to Sheffield University,
which was daunting and terrifying in itself, let alone with the additional prospect of coping with my Ataxia alone.

I am fighting this condition every day. I stumble and
trip over a lot, I have anxiety and panic attacks as I fear falling or making myself look stupid, I have severe fatigue as my body is in a permanent state of "fight or flight” so need to rest a lot, and my signature has been reduced to a simple TC, as my writing has deteriorated rapidly.  I don't want people to mistake me for being drunk because I wobble and slur my words.

I want EVERYONE to know about Ataxia, to get it on everybody's radar so at least they know the signs. I don't want this to beat me, or define me. I want to fight it, and do all I can to raise awareness but more importantly raise funds for research, as my dearest wish is that some time in the not too distant future a cure will be found.

I'm now waiting for genetic counselling, to discuss the
implications of my condition. I'll let you know how it goes...... "

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