My husband Bharat and I had just landed in Hawaii for the holiday of a lifetime, but something was wrong.
Our phones kept pinging with messages to phone our elder daughter, Amy.
I felt in my gut it was something to do with our other daughter, Emily, and when we spoke to Amy our nightmare came true.
Our beautiful, funny, crazy girl had died.
Reeling, all we knew was we had to get home. Our minds raced with questions, anger and despair, and after what seemed like ages, sobbing and unable to think straight, we were ushered onto a plane to Seattle.
The staff had stopped the last plane leaving the island when it was already on the runway, and put us on it. I remember standing in front of the mirror in the plane toilet, tears rolling down my face saying, ‘I’m coming Emily,’ over and over.
When we eventually landed in London over 36 hours later, Amy, friends and family were there to meet us and we flew straight to Leeds to meet with the coroner and see Emily’s body.
Emily’s friends had come to Leeds from all over the country to be together. It was her university housemates who had found her dead when they went up to her room that morning in December 2012 to see why she hadn’t been at lectures and wasn’t answering her phone.
Those poor, poor girls.
My own daughter was the first dead body I had ever seen. She was 19 and had everything ahead
of her. Nothing can describe the deep, wrenching loss.
Since she was 14, Emily had suffered from epilepsy, but with regular, simple medication had suffered only a handful of seizures, and even gone on to play hockey for her county. In fact, Emily’s epilepsy had been so manageable we barely gave it much thought – but simply failing to take her tablets meant her future was gone.
At 10.36pm on 3 December 2012, she and Amy had been joking on the phone about their failed fad diets. By 10.36am the next morning Emily was dead.
We finally found out the cause of her death – Sudden Unexplained Death in Epilepsy (SUDEP). We now know she’d forgotten to take her medication the previous night.
Ripped to pieces by grief, we felt powerless – nothing would bring Emily back, but we had to create something positive out of something so horrific.
So last August while on holiday in Athens, we sat around the table to think of a way to raise money.
It had to be in keeping with Emily – fun, bonkers, flamboyant. Then we had the brainwave of a tuk-tuk – Bharat is Indian, and a tuk-tuk driven on a massive journey, decorated in a way Emily would approve of, would attract attention.
We knew to raise proper money it had to be a serious trip, so we got our maps out and thought we should go through 21 countries to reflect the number of people who die each week in the UK from SUDEP.
We saw the target of Istanbul, did some calculations and, after several glasses of wine, promised we’d make it happen. We’d pay all the costs ourselves – from the insurance, to the tuk-tuk, to food and accommodation.
After some research, we purchased a tuk-tuk and learned what we’d got ourselves into.
With minimal engine power, going up the steep roads in the Alps might prove near impossible, we’d need ear defenders to stop us going deaf from the engine noise, and there’d be almost no room for any luggage.
But it was too late now. We carried on blindly into the madcap venture, knowing how Emily would be cackling if she were still with us.
We practised driving our specially decorated tuk-tuk around the local roads in Gloucestershire – getting horn honks and waves from well-wishers.
It took months to prepare: we did mechanic courses in case of a breakdown, and worked out a route, snaking through France, Holland, Austria, Bosnia & Herzegovina, Macedonia and Albania before arriving in Turkey, sticking to small roads.
With the aim of raising £21,000 for SUDEP Action, we set up a website and spread the word. Within days, offers of help and accommodation along the way flooded in.
The kindness of strangers was moving, and with a combination of people’s homes, local campsites and cheap hostelries, we soon had the full itinerary planned out.
The journey begins
On 8 September, we set out from Notting Hill, London. Bharat, Amy, her boyfriend James and I crammed our camping equipment into Emily’s old car, which would be coming as a support vehicle.
We’d take it in turns in the tuk-tuk, with one of us driving the support car. With little suspension and exposed to the elements, it wasn’t the most comfortable experience.
The tuk-tuk goes a maximum of 40mph, and slows down to a 5mph crawl on steep hills. But we wrapped up warmly, and it gave us time to share our memories of Emily – it was a cathartic process.
There were some funny moments, such as the time we stopped to take pictures at a beauty spot in the Albanian mountains, and Bharat drove off thinking I was in the back.
He chatted away for 10 minutes before he realised I wasn’t there – then he had a panic and thought I’d slid out of the tuk-tuk and tumbled down the mountain!
Sometimes things got hairy – in strong winds, the tuk-tuk blows sideways as it’s so light, and this can be alarming. There were also unavoidable stretches on busy roads, and it was terrifying as lorries swerved ahead of us.
When we reached Istanbul, a few friends and family came to meet us. Although we were proud to have made it, it felt strange to have been on a trip Emily would have loved, but that we’d never have done if she hadn’t died.
We’ve raised £150,000, but the journey was as much about raising awareness of SUDEP.
Emily’s death could’ve been prevented had her doctors explained SUDEP to us, as we could have put steps in place to reduce her risk.
The more people who share our story, the more likely it is young lives will be saved.
Sudden Death in Epilepsy: The Facts
● 600,000 people in the UK live with epilepsy.
● Around half of epilepsy-related deaths are SUDEP.
● 42% of epilepsy deaths could be prevented with proper access to care and information.
● In the UK 52% of people with epilepsy are seizure-free. 70% could become so with the right treatment and advice.
Where to get help
SUDEP Action has developed an app called EpSMon for people with epilepsy to manage their risk.
SUDEP Action recommend using techniques like seizure diaries, medication reminders and risk-monitoring apps to help you stay aware and in control, as well as having regular medical reviews to discuss risk and any changes.
- To find out more about SUDEP Action, go to Sudep.org, call the action support line on 01235 772852, or email [email protected]
- To sponsor the family, go to tuktuktoturkey.com/about
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