Becky was a beautiful, fun loving, intelligent, caring girl who was much loved by all who knew her. She loved crafts and would spend hours in her room making things, beautiful things, out of oddments. She could amuse herself quite happily. If her parents, Roger and Sandie, couldn’t find her, they knew she would be in her room, her “special place”, making something. Becky had many friends and she was a ‘girly’ girl who loved pretty things, particularly in pinks and purples. Becky experienced her first convulsive seizure in September 2001. She was promptly seen by a registrar at the local hospital but, despite all the clues, her parents were told not to worry and that it was probably migraine. They were also told there was nothing the hospital would do unless the seizures become “regular and frequent”. After a further two years of sporadic night time seizures, those words of comfort converted to renewed concern when seizures appeared on a regular basis during the first weeks of 2004. Roger and Sandie pushed for a referral. The paediatrician who subsequently saw Becky was adamant that she was only experiencing migraine attacks but arranged for her to undergo an EEG test and an MRI scan to allay any concerns. He did subsequently concur that the EEG indicated epilepsy but anti–epileptic drugs were not offered. In fact, they were specifically stated as being not appropriate because Becky was entering puberty – an opinion subsequently confirmed as being totally incorrect. Crucially, there was no mention of SUDEP. Becky died in her sleep three days before she was due to visit the hospital to discuss the MRI results. Three days after her death the family first heard the phrase “sudden unexpected death in epilepsy” during contact from the Coroner’s Office. Then, some web searching uncovered Epilepsy Bereaved and SUDEP. Becky’s inquest was held some five months after her death. Roger and Sandie had no idea what to expect and found the experience very daunting. They got through the day with invaluable support from Epilepsy Bereaved. Roger says: “Epilepsy Bereaved helped us enormously during the darkest days. We are willing to share our experience with anyone in a similar situation and are keen to emphasise how the charity can help”. Roger and Sandie are striving to ensure that Becky’s death was not in vain. They have tirelessly worked with their local NHS Trust to improve the system for children with suspected epilepsy. This has led to a new paediatric neurologist consultant post at their regional hospital. They have also raised thousands of pounds and enthusiastically supported all aspects of SUDEP Action's activities. In 2010 Roger was invited to join the Charity's Board of Trustees.