I found out that I had Friedreich’s Ataxia aged nine and was soon told in no uncertain terms that I would ultimately be confined to a wheelchair for the rest of my life. Time flew by after hearing that dreadful news and in no time at all, I was using a manual wheelchair part time. Firstly, I used it where a lot of walking was involved such as a family holiday to Tenerife and on school trips. As my condition continued to deteriorate, I started to use the chair more (only managing to walk a maximum of 20 metres before my legs could literally stand no more).
Going from walking and playing football all the time to using a wheelchair just to go out came as a massive shock to me but I quickly got used to the idea and realised that the chair was brilliant as I could save my energy for other tasks. During a visit to a disability convention in 2005, a reprehensive from the charity Whizz Kids approached my parents and began to question why I was in a standard manual wheelchair. They explained how being independent and not having to be pushed around by my parents would significantly increase my quality of life as a teenager.
My school were also adamant that I went electric as my Teaching Assistants were not able to push my fat body around the school campus so having my own set of wheels would certainly make life easier. Purchasing a decent motorised wheelchair that suited me would cost something ridiculous like £10, 000 (the same price as some brand new cars). That is where Whizz Kids stepped in again and with the backing of Tesco, purchased me and other disabled children state of the art wheelchairs for which I am eternally grateful.
The NHS refused to even consider getting me a second hand electric chair because I didn’t need one in their eyes and there was no issue with a teenager being pushed around town by his mum. To be fair, they did offer me a £250 voucher towards the cost so we would only have to raise another £9, 750. That is why charities such as Whizz Kids or The Variety Club are so important because quite a lot of the time, what keeps disabled people from getting a vital piece of equipment is the astronomical cost.
I’ll leave it there and will post again next week to explain why I hardly use the electric wheelchair anymore.