*5 YEARS AGO* Emily Sumaria was found dead by her university housemates. At 10:36pm on the 3rd of December, sisters Amy and Emily were joking about their failed fad diets before heading off to Cuba for a family holiday. By 10:36am the next day Emily was dead. She was just 19. Our family now has an enormous dark hole and we hold desperately onto memories and photographs. They are all we have.
It was so completely out of the blue – whilst Emily had epilepsy she was on medication and you could count on one hand the number of seizures she’d had. Her epilepsy was totally controlled and we had never heard of SUDEP: Sudden Unexpected Death in Epilepsy.
Amy had to deal with the immediate aftermath of her sister’s death all on her own as Rachel & Bharat were on an aeroplane on the other side of the world. She had to tell them over the phone that their youngest daughter was dead. It was a long journey home for them and it was four months before we all knew from the coroner why Emily had died.
*TUK TUK TO TURKEY* is our family’s way of taking the tragedy of Emily being stripped of her bright future and turning it into something positive. Over the past 5 years we have seen incredible fundraising efforts from her wonderful friends and Leeds university hockey team. They have inspired and motivated us to do something very much out of our comfort zone. It’s going to be a massive challenge and there is a huge amount to do – from route planning to persuading Bharat there is a genuine need for him to go on a mechanics course to deciding what colour tinsel we need to decorate our trusty Indian Tuk Tuk with! Rachel is not a natural happy camper and needs her scented candles so her expectations will need to be managed! Not to mention poor James who will be spending 6 weeks in a tuk tuk with Amy’s parents!
We’re going to leave in September and start our journey though the UK, France, Belgium…….Macedonia, Albania etc. until we end up, 21 countries (and 6 weeks) later in Istanbul. The tiny tuk tuk has little or no suspension, is exposed to the elements, is noisy and doesn’t go very fast! It will struggle up hills let alone over the Alps. We will be travelling on some very poor roads and will have to locate campsites or cheap hostelries as we go.
*SUDEP Action* is a small well-run charity that punches way above its weight. The £42,000 that will be raised by our efforts will be going towards SUDEP Action’s *PREVENT 21* campaign which will hopefully raise £1m over the next four years and go towards ground-breaking scientific and clinical developments, raising awareness of SUDEP and continue to provide the invaluable support and community that bereaved families desperately need.
21 people a week die from epilepsy and many of those deaths are avoidable. SUDEP can strike at any time and it can shatter lives overnight. Young adults are particularly at risk. People like Emily, who live with epilepsy, are rarely warned of this risk by their doctors. Their families, like ours, have often not heard of it until the coroner’s report. But this doesn’t need to happen. Awareness means that people with epilepsy can manage their risk and reduce their chances of dying.
In addition to the money we raise, we hope our colourful journey through Europe will raise awareness of SUDEP and this great charity and in turn will save lives.
*WHAT YOU CAN DO*:
*DONATE!* Anything you can donate, big or small, would be an incredible help and would really encourage us to get through all the challenges ahead of our final destination.