My daughters found their sister, 21, dead in the bath – I’m still haunted by their screams
A HEARTBROKEN dad has told how his daughters found their sister dead in the bath after she suffered a fatal epileptic seizure.
Hamish Roberts, from Hertfordshire, says his world was torn apart after the tragic passing of his middle child Amelia, 21, just five days before Christmas last year.
Amelia’s distraught siblings Lily, 24, and Kitty, 18, initially thought she had drowned but subsequent reports revealed she'd suffered an epileptic fit.
Following Amelia’s death, the family were stunned to learn that she had signed up to donate her brain to science to help other sufferers.
Here, Amelia’s father Hamish shares his heart-wrenching story with Fabulous Digital…
A few days before Christmas last year, as my family gathered at home, my girl Amelia was found dead in the bath by her sisters Lily and Kitty.
At first we believed Amelia had drowned but she had in fact died – suddenly and shockingly - of a fatal epileptic seizure.
I can still remember the screams when she was found. I rushed to the bathroom and began CPR whilst awaiting the ambulance. I didn’t know she was already dead.
After 20 minutes of exhausting chest compression the paramedics finally arrived. Another 20 minutes later, they had detected no signs of life. Amelia was pronounced dead at 8pm.
I can still remember the screams when she was found
Hamish Roberts
She was fully aware of the dangers of epilepsy but we couldn't supervise at all times - at 21 she needed to be able to have baths alone.
That terrible event threw life as I knew it into the air. Before December 20 I was bobbing along quite nicely. I had a good job, a lovely home and a loving family.
Over the past few months I have struggled to cope. I’ve never cried so much, be it from exhaustion, worry, sadness, shock, the sympathy of others or that I will never see Amelia again. At times, I have felt totally out of control.
My wife Debs and I have three beautiful daughters. Or should that be “had” now there are only two? I’m not sure of anything any longer: all my norms, aspirations and points of reference have been challenged.
Amelia was funny, kind, loving, stoic, very beautiful, intelligent and was a mischievous toddler - always up to something, usually inappropriate!
We would get out of bed and find her downstairs in front of the telly, surrounded by empty yoghurt pots, watching a gardening programme. Her defining feature, however, was her gentleness.
She loved drama, choral music and lacrosse – and went on to captain both her school and university teams.
I’ve never cried so much, be it from exhaustion, worry, sadness, shock, the sympathy of others or that I will never see Amelia again
Hamish Roberts
You could rely on Amelia to come up with the most outrageous and imaginative costumes for a fancy dress party, from an Avatar, to a prisoner, to a purple blobby thing with polystyrene eyes on springs. From oysters to water skiing, she would try anything once.
A few years ago Amelia started to describe feeling “funny” now and then. We didn’t think much about it until a friend took her out to eat while she was on work experience in the City.
When he asked her what she wanted to eat, in front of the waitress, she just stared at him and mumbled.
It turned out Amelia had epilepsy. Her condition took the form of Petit Mal seizures, during which she would “zone out”.
What is epilepsy and can you die from it?
Around in every 100 Brits are affected by epilepsy – and over half a million people in the UK have been diagnosed.
Epilepsy is a condition of the brain which can disrupt the electrical communication between neurons in the nervous system.
This often leads to seizures, a sudden event that can change a person’s awareness, behaviour or feeling.
The condition is typically diagnosed when a person has two or more unprovoked fits separated by at least 24 hours.
A number of different triggers can cause epilepsy.
These can be human factors, including sleep deprivation, alcohol or drug abuse or not eating well.
Stress, hormonal changes or the use of certain medications can also cause epilepsy.
The effects of epilepsy are most visible when a sufferer experiences a seizure.
Seizures vary in severity and can be partial or generalised, epileptic people can battle these episodes when they’re awake or asleep.
Sudden unexplained death in epilepsy (SUDEP) is a rare complication of epilepsy with one adult in 1,000 who suffer epilepsy per year dying as a result of their seizures (not as a consequence as accidents/drowning etc).
For more information visit Sudep Action.
She was characteristically frank in warning those around her that she might “disappear’ or even begin “chattin’ s***”. Her fits didn’t stop her leading a totally normal life, but the drugs used to try and control her fits, did.
She struggled to concentrate, just as she was embarking on her A levels. Her spark had gone. I had already lost part of her, her buzz, her impish humour, her motivation. All she wanted to do was be like anyone else.
She was not allowed to drive and we could sense the hurt as she watched Lily, then Kitty pass their tests, whizz around seeing friends.
Her consultants tried one drug after another, to no avail. Amelia was classed as drug resistant. She had, since diagnosis, tried 15 of the 25 known drugs.
In spite of all that she secured a place to study criminology at Portsmouth University. We did worry about her when she got there, especially as she began to experience grand mal seizures.
They were frightening for everyone, as Amelia would drop to the floor without notice, like a felled tree. She broke her jaw on one occasion and would often have cuts and bruises.
Amelia would drop to the floor without notice, like a felled tree
Hamish Roberts
We were beginning to talk with her consultant about surgery to remove a little lump the doctors could see on her brain.
On four separate occasions she spent around a week in hospital rigged up to machines as the doctors tried to identify the origin of each fit. Up until she died, these visits were inconclusive.
We remained a pretty standard family, trying to manage Amelia’s epilepsy without letting it define us.
Kitty says she sometimes felt cross, at the amount of attention Amelia received because of her condition, a perfectly natural response from a younger sibling. It affected their relationship and they could quickly squabble.
We all assumed she would conquer the condition either with drugs or even surgery. After all we were in the hands of the experts. Then, on 20 December, with the girls all gathered at home for Christmas, Amelia suffered a terminal seizure.
This is technically known as Sudden Unexpected Death in Epilepsy or SUDEP. Although we had heard about SUDEP, like most families we brushed over the subject.
How do you even begin to address the thought that your daughter could suddenly just die? It was so sudden and unexpected. It has rocked us all.
We are all grieving but each of us come to this from a different perspective as we each had our own relationship with her.
An utter tragedy. Such a waste of a wonderful life. So sad
Hamish Roberts
I have tried to sell myself another version of Amelia’s death: it could have been worse, she could have suffered for many years or actually drowned. She could have committed suicide.
A perfectly rational thought process I suppose, in an attempt to placate but the simple truth is that I lost my beautiful, 21-year-old daughter. An utter tragedy. Such a waste of a wonderful life. So sad.
Looking at photos of Amelia now really spooks me. Is this beautiful, vibrant, warm soul really dead? Impossible. You would have thought that the shock would lessen but no, it’s as vivid every time.
Amelia sought comfort and advice from the Epilepsy Society for her condition and unbeknownst to us left them her brain for research.
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It was such a mature gesture for a 21-year-old. Did she know suspect something…?
The Epilepsy Society are undertaking world class research into how best control this condition.
They have an amazing genomics project that helps them deliver the correct combination of drugs to each sufferer by looking at their eyes, brain activity, facial muscles and sequencing the individual DNA.
This project costs over £10 million and whilst supported in part by the government, most of their funds come from fundraising. As I write this we have raised nearly £80,000 in Amelia’s name. If she had gone through their programme, she might still be here…
Amelia's family are raising money for JustGiving to fund the Epilepsy Society research.
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