Growing up with ataxia | Action Medical Research

Growing up with ataxia

Ataxia makes navigating life – and her new classroom – a huge challenge for little Eva. But, says mum Carla, she refuses to let it dampen her enthusiasm. And, with one to one support, she’s taking part in everything from trampolining to collecting conkers…

 

 

It’s back to school and for Eva that means starting Year 1. Even though she’s been at her school for a year it’s a bit like starting all over again as she has to learn how to navigate a new classroom and make sense of her new, much more demanding, school experience. 

Eva’s rare neurological condition coupled with her ataxia makes it incredibly difficult for her to move around her new classroom with ease. Now she is in Year 1 the classroom is smaller and there are less play areas. She now has to learn how to move around this new classroom which has meant a few falls and bumps along the way as her new environment challenges her poor balance and coordination and she is unable to successfully calculate distance. In addition the new routine and greater focus on formal learning has been quite overwhelming as she tries to process all the information given to her and make sense of her world around her. However, Eva continues to love school and can’t wait to go every morning with a huge smile on her face. 

 

 

Eva continues to face challenges at nearly every point in her day but she doesn’t let anything hold her back. This year she has learnt to ride a scooter and has made a tentative start on a bike. She was a star in the school nativity play and absolutely loved going to Forest School once a week. Walking and holding my hand, Eva completed her first fun run with an emotional approach to the line as everyone shouted her name and cheered her along. She’s been to Portugal and danced in the street, ridden weekly at the local Riding for the Disabled centre and progressed to sitting on a saddle and holding the reins. She’s learnt to jump on a trampoline and the other day, for the first time and much to everyone’s surprise, jumped clear of the floor! And I haven’t even mentioned swimming, cooking, craft, Easter egg hunt, dressing up, collecting conkers, a visit to the zoo, growing runner beans and water fights in the garden. Oh and she lost her first tooth!  What a year it’s been!

 

 

Initially Eva’s life appears to be like that of any five year old but, in order for her to achieve all these things, she needs one-to-one support with everything she does. It is a joy to see her take part in all the things she wants to do but it is a full time job which is very demanding and all consuming. We keep going because we still have no idea what the future holds for Eva or for our family. Eva remains in the research arena and we are very lucky to have some amazing professionals who are trying to discover exactly what is going on for her. We can only hope that one day we will have some answers. Until then it’s just business as usual. 

 

 

You can read more about Eva, and find out about research into ataxia Action has funded, here.

 

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