My Name is Stephen

Written By Stephen Onimole, for Sickle Cell Welfare Forum

My name is Stephen Onimole and I have sickle cell anaemia. It has definitely been a struggle living with this disease. There have been so many times where I always ask why me, why do I have this, what have I done to deserve this? What is worse is things that come with this disease, such as avascular necrosis in the hip which I was diagnosed with recently and because I had this I had to go through so much pain and most stuff I used to be able to do by myself I was not able to do any more. I needed my mum to take me to school which was tough on my mum because she had to take my sisters to school as well. I needed my mum to dress me. And I also started having thoughts like why I exist and that if I did not exist my mum’s life would be so much easier. We tried to apply for disability living allowance. They denied us so we appealed to the tribunal. To get ready for the tribunal we visited a Welfare Advisor called Daniel Nyakutsey at the Hospital, who talked us through what was going to happen at the tribunal. He really helped us alot. On the day of the tribunal, mum and I sat down in the waiting area until we were called into a room. We sat down in this room infront of a judge a doctor and a disability person. We told them what they needed to know about sickle cell and the impact it has had on my life. We answered all their questions then they said they have heard everything and that they will call us back once they had made their decision. So we waited in the waiting room until they made their decision. And after a few minutes we were called back in and they said that they have made their decision and that we won, that we got the disability living allowance. We were very happy with the result and that after everything we got what we wanted.

By Stephen onimole

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