Shamoan Ahmed also attends Chilwell School; he has a lot of blank spells lasting seconds. He has had a number of over night epileptic seizure maybe caused by tiredness. However, at the moment he is not on any anti epileptic medication he chooses not to go on it. Shamoan will be 14 years old in May 2009. Every morning I check my son is okay I thank my lucky stars and continue with my day with the hope he will continue to keep going as long as possible. Shamoan is on a low carbohydrate diet.
Shamoan loves football and playing on play station games, guitar hero world tour being his favourite at the moment. Shamoan’s friends are always around the house. As much as I am not keen on having youngsters around my home all the time, I think the day my son is not her I wont see any of them. I take every day as it comes and do my very best for him every day. I can accept for my children to be poor or homeless or even go without necessitities in life it is so difficult for my children to know that they have the same medical condition as their sister. Worse still they saw her suffer and die. No child should have to see suffering and no child should have a ticking time bomb hanging over them. I only hope and pray that treatment and a cure is available one day for lafora. My children have a death sentence for something they have not done. If research does not take place and treatment does not become available I will loose my other two valuable assets that I am trying to hold on to so desperately.
- Submitted by Shamoan’s mother, Shekeela Ahmed