When I was 18 months old I developed systemic onset juvenile chronic arthritis. It’s a rheumatic condition affecting young children, which begins, with meningitis type symptoms. After 10 days of a very high temperature and a red blotchy rash on my torso, arms and legs I was admitted to our local hospital. I cried every time my mother picked me up, because unbeknown to her I was hurting all over my body, every single joint, My mother walked the corridor whilst I was held crying in a fetal position before being given a lumbar spine puncture test for meningitis. It was negative. The next month I stayed in hospital whilst they carried out hundreds of different tests and examinations ruling out brain tumors, Kawasaki disease and all sorts of other horrible diseases, each one came back negative with no clues as to why I was so ill.

A visiting consultant from Great Ormond Street on a ward round thought he recognized some of my symptoms and sent us up to Great Ormond Street to the rheumatology ward where I then stayed for the next year! My mother remembers vividly walking in and seeing teenagers with such severely stunted growth from steroids, they were not much bigger than I was at age two. It was confirmed that I had systemic onset juvenile chronic arthritis, for which there is no blood test. By this stage the temperature had gone down and all my joints had swelled up - like a tennis ball, my wrists, my knees, my ankles, - all my joints round, puffy and swollen. I was put on a high dose of steroids by drip, an intensive course of physiotherapy and leg splints to prevent deformity.

My parents took me to see another professor in Birmingham. He agreed with the prognosis - and to make matters worse I was category 3. This meant I would have periods of my life in a wheelchair and a shortened life expectancy. I had it badly, the worse. My mum couldn’t accept this, we just had to sit back and except the prognosis? So my mum started looking into all sorts of alternative treatments. Firstly we did diet, cutting out all dairy and vegetables that form part of the deadly nightshade family and are known aggravates. I started taking lots of different nutritional supplements and then as it’s a disease of the immune system mum started looking at how to boost my immune system.

After a year of pretty much living in Great Ormond Street we came home and just went up for check ups. Moyra, a nurse, would come to our house every week and I would hide when I saw her coming. She would numb my hand and give me an injection of methotrexate, which would make me sick for the next 24 hours. I was very skinny and most of the time I felt sick and didn’t want to eat. In the mornings my mum would lift me out of bed and sit me on an upright child’s chair, I would have to swing my legs to get the mobility back after lying still all night. As hard as it was Mummy and my younger sister would go into another room and leave me and hope that the temptation would be too much and I would come and find them. Sometimes she says I got to standing but then couldn’t move my legs. If this happened she would then put me in a bath and then if that didn’t work we would all have to go in the car to the hot hydrotherapy pool. Mum did this twice a week anyway to keep my muscle strength up. The pool was mostly full of old people and my sister would sit on the knee of an old lady whilst mummy was in the pool with me, for them it was a treat each day when we arrived to have a beautiful 6 month old little girl to play with, for my mum it was really tough - two children under three who couldn’t walk, and very emotional. It’s a long story but five years later I defied all medical expectation and was signed off from Great Ormond Street. Frustratingly they saw it as a miracle and weren’t interested in all that my mum had done. But she went on to contact The Times, BBC 4 and several other publications and told my story in the hope that we might be able to help other children with the same condition, mum got letters from all around the world! 

I’m told it took me several years to behave normally, despite being better - I was always frightened of noise, possibly from being on a ward for such a long period of time with the constant clatter of trolley’s, doors, curtains, Doctors all night long. I also didn’t have any friends as I viewed them as trouble as even being touched; yet alone being knocked or banged into was really painful. I would sit quietly and play Lego or games at a table, I didn’t want to rough and tumble with the boys. My sister was the only one who I could trust, she had always seem to understand right from a baby that I needed protecting and she was always there for me. 

Approximately 1 in 1,000 children are diagnosed as having Juvenile Chronic Arthritis each year. It begins with the temperature and rash and then the pain in the joints develops and later the joints swell. It’s treated with steroidal anti-inflammatory drugs, disease modifying or immunosuppressive drugs to prevent serious joint damage. There is currently no laboratory test to diagnose this relatively rare form of arthritis as funding is generally directed at the more common forms of arthritis.

I am doing the Ironman in hope to raise money for the charity ReMission, who supports children with a variety of diseases, one of those being Arthritis. With your support, hopefully many more children with be able to defy medical expectations and who knows, maybe do an Ironman!