Lucy was diagnosed with epilepsy when she was 11. The hospital told her parents Mark and Claire that it was a mild form and that she would probably grow out of it, during or soon after her adolescence. At no time was there ever a suggestion that her condition could be life threatening. The specialist spoke about the risk of accidents if she was to have a seizure in a potentially dangerous situation, but that was all.
Lucy initially had about three seizures a year although this did increase significantly to once a fortnight. By then her family were becoming much more concerned about their frequency. She also had a lot of absences. Until she was nearly 14, Mark and Claire hardly left her unattended. She became quite frustrated with this lack of independence and they did begin to ease off.
In 1999 she asked if she could move into a different bedroom. She had a very definite idea of how she wanted it to be. She designed the alterations and carried out some quite extensive work to give the room a really fresh feel. She only lived in it for about seven months but she was very pleased and excited by the transformation.
Lucy was 15 on 26 May 2000. In July the whole family were invited to some old friends who were throwing a joint 50th birthday party. Lucy did not know many of the people and she asked to go back upstairs at 11pm. When Mark and Claire went up to see her at 2am they found that she had had a seizure and had died.
Soon after Lucy died, Mark’s sister found out about Epilepsy Bereaved.
“We were so grateful to talk to someone who shared with us their own experience of losing a daughter from an illness that we had not known could be fatal.
Nothing will ever bring Lucy back, nothing will ever reduce the loss we feel. But by being actively involved with Epilepsy Bereaved we can feel that we are doing something relevant in her memory. We hope in some way, to convert her untimely and totally unfair death into action that prevents similar tragedies in the future.”
