What we do

Hello - I was the mum of a wonderful young man named Tom McGonigal who was diagnosed with epilepsy at the age of 15. Tom went for frequent check-ups with a paediatrician at his local hospital. He continued to have seizures his last big one being when he was 19 years of age. At the of 21 he had a stroke caused by an Aneurysm/AVM the reason I put both is because after he died the hospital could not detect what the cause had been because he had had such a big bleed. The reason I am putting this information on is because our Tom was never scanned because he had what was known as a common epilepsy, in other words they did not know why he was having seizures, that is what we were told when we asked his consultant, but were never given the chance of a scan even though we asked for one. We were told after his death that if he had had a scan the Aneurysm was not in a dangerous part of his brain and more than likely a operation would have saved his life. We are left totally devastated even two years down the line as Tom died on 4th August 2006. What we are totally amazed at is that we were never told that his epilepsy could have been triggered by something like this, we put our total trust in the doctor concerned. I would like to campaign to give parents the right to be told the truth in the first place and if they feel so should have their children scanned, if the hospitals cannot afford to do this, then it is there duty to tell the parents the truth and ask them if they would pay for their children to be scanned. We of course would have given up everything to save our child. It is everyones right to know this information. Our Tom would have been 22 on the 21st Aug 06 and was going on holiday with all of his friends the following Wednesday, so excited about it. He had worked very hard at college and ended up being a exceptionally good joiner for his age, working self employed and earning an extremely good wage. He was also buying a house with his long term girlfriend the following february, his life was wonderful and he was such a wonderful human being. This information is probably not what you are looking for, but I feel that you may have come across this before. If there is any way of getting this information across to parents with children who have seizures I would be extremely grateful. If our Toms death saves the life of but a few other young people then he would not have died in vain. A broken hearted mum Sue McGonigal