Ataxia superhero challenge
IN JUNE, Costa Blanca News reported on a local couple taking on a challenge to raise awareness about the rare and little-known condition ataxia.
Brian Davis, who suffers from ataxia, his wife Sue and family took part in the Marvel At Home Superheroes challenge by attempting a 20-kilometre triathlon at their house in Formentera del Segura.
Ataxia predominantly affects mobility, coordination and speech. People with ataxia are often wrongly perceived to be drunk because of their strange gait, lack of mobility and slurred speech.
The only certainty about this life-limiting, degenerative condition is that from diagnosis it will get worse. It is ageless, affecting adults and children alike. In Spain there are only around 8,000 people diagnosed with ataxia, whilst in the UK around 10,000. There is no effective treatment, medicine or cure for ataxia, which can for some people often mean a lack of hope, but Brian has shown just what is possible.
“When my team set out on our challenge it sounded fairly daunting, particularly as I cannot walk without my walker thanks to ataxia, but we set about it with gusto and after quickly passing this mark increased our target to 83km, the equivalent of two marathons!” he told Costa Blanca News.
“This was more of a challenge but again we soon passed that mark, cycling, walking and swimming, eventually covering an incredible 265.5km - more than six marathons. We also have raised an amazing £770, which will help Ataxia UK with research into the condition and support for people who have it. We never expected to raise this much and our thanks go to everyone who kindly donated. Every €/£ raised is guaranteed to make a difference.
“Perhaps even better is the fact that we have managed to raise awareness of ataxia, which was our main aim, thanks to our regular social media updates, coverage of our progress in the press both here in Spain and the UK, and also coverage provided by the organisers of the At Home Superheroes event and Ataxia UK.
“Apparently we also received wide coverage on Instagram, which my daughter in law Samantha sorted although sadly this is a bit beyond me.
“My personal highlight is that ‘Ataxia Man’ got to fly just like a true superhero (but minus the tights this time!) see picture left. Also the swimming became easier the warmer the pool became, however walking in the summer heat is hard.
“I am incredibly proud of my team - wife Sue, son Thomas, his wife Samantha and daughter Emilia - who made sure that motivation levels never dropped and together they kept pushing me on to an achievement beyond my expectations. “My final thoughts are that I now need a rest but hope that I have shown just what ‘disabled’ people can achieve, and that people with differences should not be judged by preconceived ideas or subjected to negative stereotyping.
“Should anyone see me out and about, please remember that I would much prefer to be asked ‘what is your problem’ rather than be subjected to ‘funny’ looks. I will not be embarrassed or upset and I think that goes for every other person with ataxia who I know; we are the same as anyone else, apart from the rare condition that we have.”