A teenager who had the "biggest heart" died just days after being diagnosed with a "silent killer".
Fay Adderley, from Huyton, began to experience absent seizures when she was a child but it wasn't until she was 18 years of age she was officially diagnosed with epilepsy. But just two weeks after the official diagnosis, on November 20, 2020, Fay passed away suddenly and unexpectedly after a seizure during the night.
Describing the SUDEP (Sudden Unexpected Death from Epilepsy) death, grieving parents Shirley and Neil, of Huyton, said it was "like a lightbulb going off", something that "no-one really survives".
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As they approach Christmas without their only daughter, and the second anniversary of the tragic loss, they want to raise awareness of the condition and urge people to take their vital medication.
Shirley and Neil told the ECHO: "The seizures Fay had were during the night while she was in bed and this was the case here. The next morning I went in to get her up about 10am and I found her lying there.
"At first I thought she was messing around because we were supposed to be putting the Christmas decorations up but Neil knew right away. She was our only child and it's like our whole world has ended.
"Life comes to a stop, and it's not just the two of us, it's the rest of the family. Fay was amazing, she had the biggest heart, was a big champion of the underdogs. She was very much for others, not herself and she loved to dance. The three of us had such a close relationship."
Shirley herself lives with a condition called neural migration disorder meaning she too suffers with epilepsy. But despite fay showing similar epileptic signs, she was told it could be down to anxiety rather than the condition.
However, the family found out after her death the 18-year-old had inherited the condition, which contributed to her sudden death. Now, the family are bravely sharing their journey in the hopes of raising awareness of the "silent killer".
Dad Neil added: "They wondered if it was due to anxiety because it was like a dizzy spell, she'd put her head down and be out of it for a while. But as Shirley's condition progressed and Fay had bitten her tongue, we just knew she had epilepsy.
"She was diagnosed on November 5 but there was a delay to the medication and it never arrived. She died two weeks later. In the February just before lockdown, the last thing she did was see the 1975 band and she collapsed in her seat, that was a seizure as well.
"Had we known it was so dangerous, we'd have pushed further. They said it wasn't epilepsy but she could've been on medication. Fay's prescription wasn't sent in time. It's predominantly young people it affects."
Shirley's own epilepsy has worsened in recent months which Neil says "frightens the life" out of him. Neil added: Fay didn't get a chance at life, she never really got started."
In memory of Fay this year, the family are not sending out Christmas cards, instead they made a donation to the SUDEP charity which they say has been a life-line, after they came across it by chance. They told the ECHO: "Christmas was massive for Fay but now we can't stand it.
"If we can go to sleep and wake up in January we would, Christmas is forever tainted but the fundraising and donating has helped because we feel it's for Faye."
Neil said: "People fail to realise this is a dangerous condition. You can stop breathing when you have a seizure or fall and hit your head. The dangers should be talked about but it's not.
"Little things could be putting kids and others at risk, like not talking about it or not refering children sooner and putting them on medication. There was 14 days between that call and Fay's death."
Epilespy
According to the NHS, Epilepsy is a common condition that affects the brain and causes frequent seizures. Seizures are bursts of electrical activity in the brain that temporarily affect how it works. They can cause a wide range of symptoms.
Possible symptoms include:
- uncontrollable jerking and shaking, called a "fit"
- losing awareness and staring blankly into space
- becoming stiff
- strange sensations, such as a "rising" feeling in the tummy, unusual smells or tastes, and a tingling feeling in your arms or legs
- collapsing
- sometimes you might pass out and not remember what happened.
More information can be found here. For more information on the SUDEP charity, click here.
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