Beka Libby is 15 years old and from Brentor, Devon. Horse-riding and reading brilliant books are her obsession. Her GCSE’s began this June… and her ataxia is making them hard. She still gave us her time to take part in our Exeter awareness campaign this summer.
We walk beside Beka as she leads Tufty, her horse, down the track roads of Brentor, and see only happiness on her face. For a long time, ataxia didn’t stop Beka from doing what she loved most. She won awards for her horse riding and found in Tufty a very dear companion. But it couldn’t last, as Beka became a wheelchair user three years ago. Rather than helping her to walk again, Beka’s father Jason hopes that potential treatments for ataxia in the future will help her to ride again. Unfortunately, no such treatments currently exist.
Since becoming a wheelchair user, Beka suffers socially from time to time. People’s reactions have been difficult to deal with: “They often stare at me, especially small children, which I find really annoying, but…you know, I’m different so I get the stares.” She also struggles with privacy, as “even when I go to the toilet, Mum has to help me with my clothes.” Remembering my own younger years, I thought that this alone would be something for a teenage girl to struggle with.
Beka was diagnosed with Friedreich’s ataxia (FA) when she was just seven years old. To correct the scoliosis and curvature of the feet – both common symptoms of FA – Beka has had to undergo multiple operations over the years.
Because of such operations and medical visits, Beka has had to miss a lot of school; with the limited support they’re able to give during her examinations, Jason knows that her GCSE results won’t reflect her ability at all: “When Beka takes her GCSE’s this year, she’ll get some extra time – but that doesn’t take into consideration her fatigue, and the people who scribe for her… they don’t know her and may struggle with the way she speaks. The education system does do a lot to help Beka, but I believe there’s more that can be done to ensure that children who have FA and other ataxias have the same chances as others.”
To all of this, Tufty has been Beka’s medicine: “I don’t think I’d be as strong as I am now if I didn’t have her.” Her new outdoor wheelchair means that she’s able to continue visiting Tufty and take her for walks. Without it, living somewhere this rural would be incredibly hard with her level of mobility. Along with associated financial organisations, Ataxia UK have helped to raise the money to pay for Beka’s chair and continue her access to her dearest friend.
Until we find a cure for ataxia, the most important thing we can do is to support people who are affected by it as best we can. Through the grants and funding that Ataxia UK offer, we give financial assistance to improve the lives and well-being of people who are affected by ataxia. This campaign will also get the word of this condition out there among the public, so that Beka and people like her can stop “getting the stares.” Please help us to continue this work by sharing our campaign, and donating if you can.