It was May Bank Holiday 2000. Every year there is a May Fair in Wokingham and as usual my husband, Nick, and I took our two boys along, James, then 4, and Tom who was 18 months old. We had had a very busy weekend as my sister got married that Saturday and James had been to a party as well. During the course of the day James started to sneeze quite a lot and was very restless when we put him to bed that night, but we just put it down to being 'overtired'.
The next morning, after Nick had left for his job in London, James came into my bedroom and crawled into bed. He was very hot and I initially thought he had a flu bug. I got myself dressed and opened the curtains. 'Close the curtains Mummy; the light hurts my eyes.' This, of course, made alarm bells ring...I went to give him a cuddle; 'don't touch me; it hurts' James said. I went to take his temperature (which was 104) and as I lifted his pyjama top noticed a purple rash under his arm. I remembered the tumbler test and sure enough the rash did not fade. I called our surgery and within 20 minutes our own GP came out. He checked him over and then injected him with penicillin. He went to the spare room to call for an ambulance and inform the Royal Berkshire Hospital in Reading we were on our way. I subsequently found out that the Royal Berks did not want us to go in until 11am, as they were so busy, but the doctor told them that James would not be alive by 11am if he was not admitted!
I called my parents-in-law who came to look after Tom and phoned Nick to get home from work. In the ambulance James went downhill quickly. I was still in denial, though, telling the paramedics that it was probably a viral rash and we would just be sent home with Calpol!
By the time we got to hospital James was semi-conscious and was covered with a purple rash. We were rushed straight to the high-dependency unit. This was when Nick and my mother-in-law arrived and we all just stared at James on the bed covered in wires and unable to take in what was happening. I was sent outside when James had a lumbar puncture, a procedure he remembers to this day. I then had the task of speaking to the local Director of Public Health as apparently there had been a high number of cases of meningitis in the Reading area. I then had to call everyone we had been in contact with in the week before he became ill - his nursery, my friends who had been at the party and all our families.
Thankfully, James responded to the antibiotics that he was given very quickly and within five days was discharged from hospital with no apparent side effects, although the nurse still had to visit us every day to give him his drugs intravenously. We were just counting ourselves lucky when, unfortunately, James was readmitted to hospital with pneumonia, which rapidly developed into pleurisy and necessitated a chest drain and a further two weeks in hospital.
Nine years on and James is a typical 13-year-old. He has been diagnosed as having dyspraxia and mildly on the autistic spectrum, but is a very intelligent boy whose ambition is to discover a cure for cancer! We in turn consider ourselves to be incredibly lucky on so many levels. Lucky that our GP responded so quickly by giving James penicillin, lucky that the illness developed during the morning and not in the middle of the night and lucky that I had picked up a symptoms card and had it on my fridge!
My mother-in-law made the initial contact with the Foundation to try and understand the illness. We have had many contacts with the Foundation. We have raised over £10,000 by organising children's sponsored walks. I have also been the media contact for the area and have done several interviews in newspapers, on the radio and on TV. We are incredibly grateful to all the support the Foundation has given us.