Saturday, 23 March 2013

My story-part 3

Yesterday, I left you all at the point when I was diagnosed with Friedreich’s Ataxia. You might say that I seem to rush through the next decade of my life but it reflects how things have been. One minute, I was walking around (wanting to become a professional footballer) and the next, I’m in a wheelchair permanently.

From the moment I found out, I was sent for yearly heart appointments at G.O.S.H. and yearly x-rays on my spine at Stanmore. My condition gradually got worse from then on and I was soon using a wheel chair part-time. At twelve I was given an electric wheelchair by ‘Whizz Kids’, but still didn’t need to use it all the time. By the time I was fourteen it became impossible for me to use the stairs so our garage was converted into a bedroom. I had to use the electric wheelchair more frequently.

After finishing my GCSE exams at sixteen, I finally had to have an operation to fix my scoliosis. After the major operation, which hospitalised me for over a month due to minor complications, I could not walk so I was permanently using my wheelchair. It took a long time for me to be able to weight-bear in order to do transfers. By the time I could, the Doctors discovered the rod in my spine had snapped and as I was in severe pain I needed another operation.

Two years after my initial operation I finished my A levels and then was operated on for a second time. The procedure was successful and they put a second rod into the bottom of my spine to give it stability. However, there was another crack in the top of the rod, which was noticed after the operation, and they are keeping an eye on it.

This is my story up till now and it has taken a long time to accept that I am in a wheelchair and my body is always changing. My condition continues to get worse and the latest problem seems to be my hearing.

Now I have got my head round it so to speak, I want others to understand what it means to be disabled and that is why I blog. The Big Blog Exchange would give me the unique opportunity to open other’s eyes. However, this dream will definitely not become a reality if the pace of voting continues. Let’s get the votes coming in thick and fast again:

Bye for now!


  1. Oh my! I feel sorry for your condition. I do hope there's a way to make your condition better. I heard that disease can be treated by surgical interventions. Plus, physical therapists will prescribe you with an exercise program that will help you in your condition. Also, make sure that you file an social security disability insurance to get your benefits.
    - Erminia Cavins

    1. Unfortunately, my condition cannot be cured by surgery although I do exercise regularly which helps.