I want to be clear about a few things before I go any further: I hate my Friedreich’s ataxia because of what it has done to my body, what it is doing to my body and what it will do to my body, the life I never had because of it, the experiences I have to have and the way I have to live my life now and the life I will have. I would do anything to cure myself of Friedreich’s ataxia.
It took me a long time to accept Friedreich’s ataxia into my life, I don’t want it but there is no escaping it and it has to be acknowledged (the reason I’ve learnt this is mostly because I tried to ignore it for so long!) I feel lucky to have the life I have now, a fantastic husband an amazing family and great friends.
Even if I was completely able-bodied I don’t think I would ever have been the kind of person who jumps out of bed every morning smiling from ear to ear, but I really don’t know because any of the decisions I remember making in my life have all been made with Friedreich’s in mind – even when I was ignoring it! When I was showing symptoms but I still haven’t been formally diagnosed it still influenced my decision-making – I didn’t want to go to a shopping centre because it meant a lot to walking across open areas and I needed a wall to balance me, I didn’t want to go the route for a bike ride because it had a long the steep hill and I knew my legs would tire and walking it simply wasn’t an option I didn’t want to go swimming with my friends because walking along the edge of a wet pool with no support had become increasingly difficult.
Please don’t want take me up the wrong way, I love my life and the people in it – I am well aware of just how fortunate I am to have such love and support, but there will always be the question in my mind “if I didn’t have Friedreich’s ataxia where would I be? What kind of life would I be living?” I say I’do anything to cure myself of it, however, I’d like to think that even if some miracle drug is found it would not change who I am because my Friedreich’s ataxia doesn’t define who I am, yes I most certainly have made certain choices because of my Friedreich’s ataxia but my Friedreich’s ataxia is not me.
They have spent the last 16 months developing an organisation founded on the principles of “Autonomy” and “inclucivity”, members running and managing the charity, they are currently defining their processes and procedures, supporting members, all on a voluntary basis.