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Story by Martin & Amanda Walker

Amber

Our daughter didn't need to die young. On 19 April 2023, we lost our beautiful daughter Amber. She was just 22 years old.


After several false starts, she had at last found a career that made her happy, and which was suited to her outgoing personality. She loved her work at Grosvenor Casinos, and she was loved by her manager and workmates.


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In the early hours of 19 April last year Amber was busy ordering outfits for a work awards party, and when she finished, she went to sleep happy.

 

She never woke up.

Our gorgeous girl had suffered her first epileptic seizure when she was nine and had lived bravely with epilepsy through her teenage and early adult years.

And throughout that whole period, not one consultant, doctor, GP or specialist nurse told us of the phenomenon that ultimately took Amber’s life. SUDEP – sudden unexpected death in epilepsy.

This is particularly surprising as there are a number of red flags associated with SUDEP, and they were all present for Amber – and still it wasn’t raised.

One in a thousand epilepsy sufferers – more likely to be younger people – die because of SUDEP every year. On average there are at least 21 deaths a week and it’s estimated that as many as half of these deaths could be avoided with greater awareness and education.

One consultant told us he generally didn’t raise SUDEP as it made for a difficult conversation. Not as difficult as the conversation we were having with him after Amber’s death.

Over the years we all became used to dealing with seizures. We were very aware of the dangers of swimming, driving, even crossing the road, but we didn’t know that a seizure could result in sudden death.

If we had been told about SUDEP Amber might still be with us today. We say this because Amber’s consultant did suggest that she could increase her secondary medication, but didn’t point out that this was imperative, and the possible consequences.  But Amber, a young woman clearly in denial of her condition and recently diagnosed with ADHD and possible autism, with her mum who clearly had come to support her daughter in any way possible, declined to do so.

If we had been told about SUDEP, we (and possibly even Amber), would have insisted that the medication was increased.  No sum-up consultation letter ever pressed the importance of increasing the medication.

Nobody ever warned us, and we had never heard of SUDEP, so it never featured in our online research over the years.

SUDEP Action are doing everything they can to spread the word, particularly that there should be more open discussions, and that the target should always be 100% seizure control.

We plan to carry on helping them spread the word, keeping Amber’s name alive at the same time.

Our aim in telling Amber’s story is to make sure that other families don’t have to suffer the same loss and grief that we have, because of a lack of openness.

On a final note, literally, Amber was a brilliant singer, and at her farewell service on 25 May 2023 we played a recording of her singing Elton John’s ‘Your Song’ recorded when she was just 16. It was very moving.

 

We invite you to share your story

Your experience has the power to make an impact and help SUDEP Action to break down barriers for change. Contact us to learn more.