Becky became a victim of SUDEP on a wet spring morning in May 2004, exactly 3 months short of her 12th birthday.
She suffered her first ever seizure in September 2001. She was promptly seen by a registrar at the local hospital but, despite all the clues (so obvious in hindsight) we were sent on our way with a “nothing to worry about, it’s probably migraine, we can’t do anything more unless the episodes become regular and frequent” message.
After a further 2 years of sporadic night time fits, those words of comfort converted to concern when seizures appeared during the first weeks of January, February and March 2004. We pushed our GP for a referral and were given an appointment to see a paediatrician who was adamant that Becky was suffering from migraines. He did, however, agree to arrange for her to undergo EEG and MRI scans for our peace of mind but stated that even if we were proven right, seizure control medication was “out of the question for a child of this age”. We have subsequently found this statement to be totally unfounded. No mention was made of SUDEP.
Although academically extremely bright, Becky wasn’t naturally good at sport or music but, having an older sister who excelled at both, she was always willing to try anything and give it her best shot! Her favourite pastime was attending a weekly drama class, which she absolutely adored. Becky loved to participate and be involved with others and always gave her best at everything she tried – be it at work or play! How we miss seeing the way she would have developed into adulthood.
She saw a lot of the world in her short time on earth – Italy, USA, Greece, Barbados, France and more. She absorbed cultural details. She was a hard and diligent worker at her schools and would undoubtedly have shone at university.
Becky’s inquest was held some five months after her death. We had no idea what to expect and found the experience very daunting. During the proceedings it became clear that up until that day, the Coroner’s knowledge of SUDEP had been extremely limited, to say the least. We got through the day with invaluable support from SUDEP Action. We are willing to share our experiences of the inquest, via SUDEP Action, if this could help anyone in a similar situation.
We are striving to ensure that Becky’s death was not in vain. In the early days we worked with the local NHS Trust to improve the system for referring children with suspected epilepsy. For a number of years our efforts have been directed towards supporting the Education & Awareness programme at SUDEP Action which promotes awareness of the ways to reduce epilepsy deaths. Initially Roger joined SUDEP Action's 'Planning and Development' committee and subsequently served on the Board of Trustees from 2009 - 2017.
Over the intervening years, we have been invited to talk about our experience at pharmaceutical company events,
NHS conferences and several similar gatherings of health care professionals and other interested parties.
We have also spoken on local television and national radio programmes to highlight the importance of diagnosing epilepsy and raising awareness of SUDEP. We raise funds for SUDEP Action in Becky’s memory when opportunities arise. We have held quizzes, band evenings, dinners and a Barn Dance. We have also both run the London 10k many times and each year, the number of runners in Team Becky seems to grow. Roger was going to retire from running when he reached 70 in 2015 but he hasn't yet hung up his running shoes! A host of friends and family members continue to support our awareness efforts and Becky’s older sister, Lauren, has run a series of very popular “fete and farm experience” days in her sibling’s memory.
Our beautiful Becky is no longer with us – but her memory always will be.
Sandie & Roger Scrivens