Who am I?

I am a 20-year old student currently studying an undergraduate degree at the University of Leeds. At the age of 10, I was diagnosed with Limb Girdle Muscular Dystrophy. A progressive degenerative muscle disorder. My condition means that I am unable to walk, and I have little to no upper arm strength.

My story

In 2011, I underwent spinal surgery and although it improved my respiratory health, I now deal with chronic pain in several areas of my body, in particular my hip and lower back. Part of this is due to spending prolonged periods of time in my chair, which is necessary for me to be able to be productive and achieve tasks during the day. Multiple transfers, to alleviate pain, leave me with no time to be able to go out, carry out my studies at university, have the time to socialise with friends or other activities; social, academic or personal. Transfers are also increasingly difficult after surgery due to a change in my posture and it is painful moving constantly from bed to chair as I cannot lie down without my hip ‘cracking’ first.

My current wheelchair has opened many doors for me and allowed me to live an independent life. In 2010, I was fortunate to receive a private chair which had many functions that have greatly improved my life. Sadly, my chair has reached its expiry date and no longer works as it used to with constant breakdowns occurring more frequently. I have the opportunity to get another private chair, but it comes with a hefty price tag of £24,000 and this is sadly above what I can afford. For this reason, I am appealing for funds from charities and attempting to self-fund part of the cost, so I can regain my freedom and independence.

The ability to own a private chair that can meet my needs has granted me many opportunities that I have taken full advantage of. I am currently attending university and having the ability to use the various functions on the chair has allowed me to relieve pain and pressure and therefore make the most of my university life. I have been in volunteering opportunities that have given me invaluable experience related to my degree programme and I have even received a reward for my work. The hours that I spent volunteering my time would not have been possible had I owned an NHS provided chair as it would not have provided me with the same functions to keep me comfortable enough to get involved in these volunteering projects.

Via my degree programme, I also had the amazing opportunity to travel and live abroad for a year to continue my studies. This was an immense milestone for me as I reached new heights in my academic achievements and also literally as I also climbed a mountain; a task which would not have been possible without my wheelchair. My year abroad is not an opportunity that is readily available or suitable for someone with a disability but with family support and my wheelchair being reliable, comfortable and durable I was able to make this rare occasion a reality. Knowing that I did not have to worry about my chair being able to meet my needs, I was able to focus on making the most out of my studies during the year abroad and as a result I received an award for achieving the highest marks in my group.

In June, my chair underwent a series of breakdowns. These breakdowns left me unable to use my chair and I spent a week bed bound and two weeks with a faulty chair that would stop and start. During this period, I felt incredibly trapped, I was forced to cancel my volunteering because I could not risk breaking down outside the house. I had limited movement both in bed and in my broken chair and I had to increase my pain medication in order to cope. I tried using my NHS-provided chair as a last case scenario but sadly, because it wasn’t suitable for me, I could only sit in it for a very short period in the evening, so I could eat at least one meal independently. This experience only validated the fact that without a private chair, I am not able to function at all.