How music keeps Fay close

Like many people, Shirley and Neil Adderley have been catching up with rescheduled gigs booked since before the pandemic. But every concert brings back heart-breaking memories of their daughter Fay who should have been attending with them. Here the couple explain how each concert is an emotional rollercoaster.

Before the pandemic, Shirley and Neil Adderley were looking forward to attending a series of special concerts with their daughter Fay.

The close-knit family shared a love of music which they liked to enjoy together, and the gigs - including tickets to see Harry Styles - had been booked as part of Fay’s 18th birthday celebration in May 2020. They were also planning a trip to New York to mark the occasion.

“Everything had to be postponed because of the pandemic,” said Shirley, “but Fay didn’t mind – she was happy that they would all go ahead eventually, including the trip to New York.”

But on 6 November 2020, Fay was diagnosed with epilepsy. Just two weeks later, before she had received her first dose of anti-seizure medication – she lost her life to Sudden Unexpected Death in Epilepsy (SUDEP).

SUDEP happens when a person dies during or following a seizure, for no obvious reason.

"It doesn't feel real"

“Fay was absolutely fine when she went to bed on the night of the 20th of November, but on the morning of the 21st, we found our daughter in her bed – she had passed away,” said Shirley.

“We still can’t get our heads around the fact that she has gone. It doesn’t feel real. 

“It was horrendous,” said Fay’s dad, Neil, a police officer. “It has torn our world apart. Fay was everything to us.”

Since the pandemic, Shirley and Neil have shared some of the concert tickets with Fay’s family and friends. Fay’s cousin, Eve went to see Harry Styles; her aunt went to see David Gray and her schoolfriends went to see Five Seconds of Summer.

But Shirley and Neil kept the tickets for Genesis and Michael Kiwanuka, so they could enjoy them with Fay, taking along a cherished photograph of their daughter to hold throughout each concert. 

Songs are a reminder

Neil continued: “It’s never the same. It’s very emotional. Even when you are enjoying a concert, the fact that Fay isn’t with us brings you right back down to earth. All the songs that remind us of her make us feel upset.

“Fay was very loving with a huge warm heart. She was very caring and had a great sense of humour. She was always interested in others and was a great advocate for the underdog if she felt somebody was not being treated fairly.”

Shirley and Neil intend to continue to take Fay’s photo with them to concerts but they also want to raise awareness about SUDEP and the need for more research into why it happens, particularly to young people with epilepsy.

600 lose lives to SUDEP every year

There are 600,000 people in the UK with epilepsy and 1,200 of them lose their lives to epilepsy related causes every year, including 600 to SUDEP.

Neil continued: “In the last couple of days, one of Fay's school friends messaged us with a lovely quote that sums Fay up – ‘You make everybody around you feel seen, that is your super-power’.

“Fay would have wanted people to know and understand about SUDEP.”

“I have epilepsy myself,” said Shirley. “I was diagnosed when I was 21. I’m 49 now and although I had heard of the word SUDEP, it had never been in relation to me, so I had never worried.”

No referral to specialist

Fay had three seizures, two in the night where she bit her tongue and woke up with stiff legs and a third witnessed by her mum during the day. A few years previously, she had experienced absence seizures though they had been dismissed as anxiety. She was supposed to be referred to a specialist, but the referral didn’t come through.

“If I had known how serious epilepsy could be and that you could die from it, I would have insisted on that appointment and Fay would have been on medication two years earlier. Things could have been very different,” said Shirley.

“I can’t understand why people aren’t told about SUDEP at their first appointment. People are told about risks in other conditions but not in epilepsy. People don’t think there is a risk for people with epilepsy. But lots of young people lose their lives. It is devastating what it does to families. People should be informed right away and there needs to be more research.”

As well as epilepsy, Shirley also has neuronal migration disorder, where neural circuits in the brain do not form during pregnancy and areas of the brain are abnormal or absent. An autopsy found that Fay had the same disorder alongside her epilepsy.

SUDEP - key area of research

Nicola Swanborough, Head of External Affairs at the Epilepsy Society: “It is always upsetting when we hear of people losing their lives to SUDEP, particularly young people like Fay, in the prime of their lives. Every life lost is a tragedy.

“SUDEP is one of our key areas of research at the Epilepsy Society. Research suggests that there is not just one cause of SUDEP but that there may be many mechanisms involved. We are looking for genetic variants that may suggest a susceptibility for SUDEP. By identifying individuals who are at greatest risk, we can offer potentially life-saving preventative measures and concentrate efforts on gaining better seizure control.

“It is vital that everyone with seizures is aware of the risks of SUDEP in the context of their own epilepsy. This is something that should be discussed at diagnosis with a healthcare professional so that the person understands the importance of taking their medication as prescribed and of looking after themselves. It is rare for epilepsy to be fatal but people must be given the full facts.”

More information

Find out more about SUDEP and how to reduce your individual risk.