Tragedy: Matthew, 20, died in his sleep
PUBLISHED: 09:27 17 June 2009 | UPDATED: 23:41 15 June 2010
A LYME Regis couple are marking what would have been the 22nd birthday of their late son, who died suddenly in his sleep 18 months ago.
A LYME Regis couple are marking what would have been the 22nd birthday of their late son, who died suddenly in his sleep 18 months ago. Kerina and John Toates, along with grandmother Iris Holt, also hope to raise awareness of seizure-related deaths after Matthew was found dead in his bed in December 2007. Matthew, who was diagnosed with epilepsy aged seven, died just one month before he was due to move and join his family in Lyme Regis. Kerina, who is a midwife at Honiton Honiton Community Hospital, said: "The doctors told us he was high risk but you never think it's going to happen [that he will die young]. "I feel guilty because I think that if I only heard something I could have resuscitated him or something. I just thought he was fast asleep. "I just miss him every day and it's left a huge gap in my life." "Iris, 78, who was the first to find Matthew that day, said: "I said 'something is wrong with him'. I knew what it was but I couldn't bring myself to say it. He was like a son and just brought joy into my life." There are 1,000 deaths a year in the UK attributed to epilepsy, and half are SUDEP (Sudden Unexpected Death in Epilepsy). Most deaths occur in young adults who are otherwise healthy. As most deaths occur at night, SUDEP has been likened to cot death. Kerina said Matthew, who had done an animal care course and had been doing voluntary work on a small holding, had been looking forward to moving to Lyme. She said: "He loved nature and had worked with animals. He always frequented the fossil shops and used to practice his meditation overlooking the Cobb. Every day we are here reminds us of what he is missing." Kerina believes there is still a stigma attached to epilepsy and that people are unaware to what extent it can impact on the sufferer's life. She said: "People find it frightening and upsetting to see someone having a fit. It interrupted Matthew's schooling and stopped him finding work. Many places wouldn't take him on because of health and safety reasons." She says epilepsy is a disability, and one that is possibly discriminated against more than others. Matthew's social life was also affected because epilepsy limited what he could do and where he could go. Kerina said: "He wanted to fit in with his peers but he had to be careful, with alcohol for example." There was also the risk that he could hurt himself when he had a fit. Kerina describes how he fell down the stairs on one occasion after he lost consciousness. Iris added that relationships could be difficult as people made judgments about his illness. She said: "He used to say 'if only I could have found someone to love me." Now the family want to educate people and help stop further deaths. She hopes to raise funds for Epilepsy Bereaved, which aims to prevent deaths through research, raising awareness and lobbying politicians to improve NHS epilepsy services as well as offering bereavement support. Kerina said: "I feel strongly about people being educated and raising awareness. Then perhaps other people won't have to go through what we have been through as a family." The family is holding Matthew's Angel Day, an open house, to celebrate his life and raise funds for Epilepsy Bereaved. Coffee and cakes will be served at the event at Maybrook, 6 Springhill, Haye Lane, Lyme Regis, DT7 3NH, on Saturday, July 4, between 11am and 3pm. l There are 450,000 people in the UK with epilepsy and one in 20 people will have one epileptic seizure in their lifetime. l Epilepsy has many different causes, but sometimes the cause is simply unknown. l The National Audit of Epilepsy Deaths found that 42 per cent of deaths, or up to 400 a year, were potentially avoidable - lack of access to a specialist epilepsy service, inadequate treatment, and unsatisfactory information about minimising risk of epilepsy related deaths. l Around 70 per cent of individuals with epilepsy could be seizure free with optimal and individualised treatment - but 69,000 people with epilepsy are continuing to live with unnecessary seizures.