Amy, Rachel and Bharat Sumaria and James Hewitt are driving an Indian TukTuk from London to Istanbul through 21 countries and over 6,000 km. The challenge is being done to remember their daughter and sister, Emily Sumaria who died aged 19 at university of Sudden Unexpected Death in EPilepsy. We spoke to Amy about the incredible challenge her family and boyfriend are embarking on and the motivation behind it.
Emily was a gregarious, loyal and beautiful daughter to Rachel and Bharat and sister to me. She was the life and soul of the party and someone who lit up any room she walked into. Without a doubt she was the funniest of the family and had a border-line unhealthy obsession with James Arthur on the X-Factor. She had lots of friends, she was smart, she was sporty, could pull an extraordinary number of funny faces and had gone on to have a fun-filled life at university in Leeds.
Emily died completely unexpectedly whilst at university. At 10:36 pm one December night five years ago, we were joking about our failed fad diets before heading off to Cuba for a family holiday. By 10:36 am the next day Emily was dead; she was just 19.
Emily developed epilepsy at 14. Her epilepsy was not severe and it was fully controlled by medication; you could count on one hand the number of seizures she'd had.
It was 4 months after Emily was found dead that we finally knew from the coroner that she had died from Sudden Unexpected Death in EPilepsy (SUDEP). We had never heard of SUDEP before and we had never been warned that it was a risk to Emily.
SUDEP is severely under-researched and to this day not much is known about it. The uncertainty surrounding it, coupled with the fact that it is a difficult topic to broach, means that often those with epilepsy are never told about it by their doctors, despite current understanding (or lack thereof) suggesting that SUDEP could be a risk to anyone who has epilepsy, regardless of the severity of their condition. There are ways to minimise one's risk, but it remains a risk all the same, and the 600,000 people in the UK with epilepsy deserve to know about it.
21 people in the UK die from epilepsy every week and many of those deaths are preventable. Epilepsy is one of the top 10 causes of death in the young and it is therefore vital that those with epilepsy and their families are aware of all the facts. This is a crucial part of managing risk and preventing the unnecessary loss of life in the future and is something SUDEP Action, amongst other things, works hard to inform people about.
There are a number of things we and Emily would have done differently if we'd known her epilepsy could kill her and we don't want any other family to go through the trauma of what we have experienced.
In September this year we're going to drive a tiny, draughty, noisy, relatively slow Indian Tuk Tuk (with minimal suspension) from London to Istanbul through 21 countries and over 6,000 km in (hopefully!) 6 weeks. We've designed the TukTuk ourselves but driving it so far has not been without drama - Bharat mounted the (empty) pavement the other day and shot off after getting confused over the 'controls' - so its safe to say that we need a lot more practice before we go!
This trip is our family's way of turning the tragedy of Emily's death into something positive and our aim is three fold:
Increase awareness of epilepsy and, more specifically, SUDEP.
Raise £60,000 for SUDEP Action, a charity very close to our hearts that works tirelessly to help fund ground breaking research and award winning initatives, such as the EpSMon App; to lobby the government to make SUDEP a government priority; to educate, raise awareness of and provide information to clinicians and the public about SUDEP; and to provide free counselling and support for those left bereaved by epilepsy.
Have a mad adventure that Emily would have been proud of.
The idea came to us when we were on holiday in Greece and were sitting on top of a viewpoint overlooking Athens talking about Emily. We'd never felt ready before to do something in her memory, but as we spoke about her and how incredible she was we all agreed we wanted to do something as a family.
We knew we weren't marathon runners and so we started tipsily formulating an alternative that we felt would be something novel and exciting, still a challenge. It had to be something that Rachel's knees could cope with but that suited Emily's mad, creative personality and would hopefully raise a lot of money and awareness all at the same time.
Why a Tuk Tuk I hear you ask? Emily was half Indian and so we're paying homage to her roots by driving an Indian Tuk Tuk. Istanbul felt like the right place to finish our trip because it's where East meets West and is a further nod to Emily's heritage. 21 people in the UK die from epilepsy related deaths every week so we hope that by driving through 21 countries we can turn the spotlight on this fact and engage people in a conversation about epilepsy and, more specifically, SUDEP.
We need your help and support to raise awareness and support for SUDEP Action. We have an exciting Auction taking place on Jumble Bee until the 23rd June with over 50 unique and interesting lots. There really is something for everyone. Think treating yourself. Think birthday presents. Think Christmas presents. Think getting together with friends to bid on something. Think BID! We have everything from Arsenal & Chelsea tickets to a pet portrait commission and everything in-between.
Anything you can donate, big or small is hugely appreciated. You can find more details on our JustGiving page. If you or your company really love what we are doing and would like exposure on all our platforms then we have the option to also sponsor one of our 21 countries meaning your logo and branding can join our journey.
For more information on SUDEP and the incredible work done by SUDEP Action please head to their website. You can also follow Amy and the rest of the Tuk Tuk to Turkey team on Instagram, Twitter or at tuktuktoturkey.com.
Amy will be joining us at our Ladies-who-Brunch event on Sunday 24th June to talk to our guests about Emily's story and the amazing challenge she and her family are embarking on.