I was born in 1984 and in January 1986 doctors discovered I had Gaucher disease; my parents had no idea what it was. The doctors at Kings College explained that there was no cure and that my bones would deteriorate, and I would be in a wheelchair by my early teens and dead by my late teens.
As we were leaving a doctor suggested we contact the Westminster Children’s hospital. They explained to my parents that all they could offer me was a bone marrow transplant and that the risks were high but that this was my only option. There wasn’t any enzyme replacement therapy then.
In March 1986 all of my family were tested to see if they were a match for me but none of them were suitable donors, so we asked the Anthony Nolan Trust for help. They found one possible donor out of 40,000 people. In August 1986 my spleen was very large and I was unable to walk so I had a splenectomy, this operation had to be done anyway so that I could have a bone marrow transplant.
In September 1986 my Gaucher disease had accelerated, and doctors told my parents that I must have a bone marrow transplant. I went into hospital to prepare; they bathed me in a special soap and placed me in a small cubicle. This was to be my home for two months. I was given many drugs for the transplant which made me lose my hair and appetite. In January 1987 we found out that the transplant had failed and that we needed to find a better donor. Throughout 1987 and then in 1988 new doctors came to the hospital but many of them left as the Government were closing hospitals and Westminster Children’s Hospital was one of the hospitals they wanted to shutter.
In 1989 we met a new doctor, he wanted to me to have a second bone marrow transfer with a new donor. In June 1989 the operation happened but things didn’t go well. Nobody knew why I wasn’t getting better and I had to stay in hospital for five months.
In January 1990 I went home and couldn’t go to school but by September I was able to go for two or three days a week. During my primary school years, the teachers understood that I had problems, that I was slow at doing things. When I was 11 years old the teachers said that I was not capable of going to secondary school, but I did go, and I did struggle but I had a teaching assistant to help me. At the age of 14 I was preparing for my GCSE’s, again the teachers said I couldn’t do them, but I achieved six out of the seven I took. I am now at college and on Saturdays I work in a shop for a few hours.
I know you may think that you have been dealt a bum card in life but I want to show you that life isn’t that bad. You should all be happy to be alive and living life to the full despite everything.
