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I was diagnosed with SMA at the age of 14 months (and I hate to admit that is nearly 40 years ago!!) my parents noticed that there was something wrong when I didn't appear to be starting to crawl as quickly as other children. The doctors were at first unsure of a diagnosis and had to take several muscle biopsies before SMA was finally diagnosed.
I attended a mainstream primary school but in those days electric wheelchairs were unheard of so I had to rely on my little school friends to push me around school. I remember that in return for the favour my wheelchair and I came in very handy when someone was needed to "take end" for their elastic skipping games!!
When it was time to move up to "big school" my parents and I had to make some important decisions. It became clear that none of the Secondary schools in Cardiff were equipped to cater for a wheelchair user and neither my parents or I were happy about me attending a special needs school. So at the grand old age of 11 I agreed that I wanted to attend a boarding school (after all, I had read all the Enid Blyton "Mallory towers" books and midnight feasts sounded a fab idea!!) and that is where I stayed for the next 5 years. I didn't do too badly in my "O" levels as they were called then but I am constantly reminded that maybe if I had left the boys alone I would have done a lot better!! Boarding school prepared me a lot for the "outside world" in particular independent living and getting used to personal assistants at quite a young age.
At age 16 I attended a 1-year course at a local college in Cardiff purely to try and gain a few more qualifications. Then, soon after leaving, I started working. I wont pretend that it was easy finding employment because it wasn't I faced quite a lot of discrimination which, I am pleased to say, is not half as bad now as it used to be. I did manage to get a job though and today I am still working full time for a local dairy, which I thoroughly enjoy. I have always felt that is important to try and keep working for as long as possible. Yes, it is quite easy to sit back and not be bothered but I would much rather be integrating with people.
After meeting so many friends through getting involved with the Jennifer Trust I cannot believe that it took me until age 30 to move out from my parents and live independently. This is largely because I never in a million years thought I would be able to do it. Until my first JTSMA conference. I met so many new friends all who had been living independently for years aided by a team of personal assistants who were employed solely to enable them to carry out every day activities and the thought I was left with after that weekend was "if they can do it so can I" and I did. Again, I am not going to pretend it was easy: my mother was mortified! I will never forget her saying "Who on earth is going to cook your tea?"
Unfortunately in this life no one is going to come knocking on your door offering all the help and support you need. You have to fight every step of the way and believe me sometimes it is a fight. Sometimes I thought to myself "why am I putting myself through this when I have a perfectly cosy life at home with my parents" but the answer was simple. They are not getting any younger and would not always be fit and able to look after me and it was only fair that after looking after me for 30 odd years they now made time for themselves. So 18 months later I moved into an adapted bungalow aided by a team of 10 personal assistants on a rota basis. That was 8 years ago and I can honestly say it was the best thing I have ever done. My parents are elated that it is working so well (although mum still wants to cook my Sunday dinner and a meal in the week!!).
I like to think that I have a positive attitude to life. I will not pretend that living with SMA is a breeze because at times it certainly is not and yes there are things I would like to do like "normal" people, but I feel it is important that with the little energy we do have to channel it into the things we can do rather than wasting precious time worrying about the things we can't. | 
