Dawn Ged­des talks to the fund-rais­ers tak­ing a tuk tuk to Turkey

Dawn Ged­des meets a fam­ily on a mis­sion to Turkey to raise aware­ness of the risks of epilepsy.

The People's Friend - - Contents -

WHEN Emily Su­maria died five years ago at the age of just nine­teen, her fam­ily didn’t know that Sud­den Un­ex­pected Death in Epilepsy (SUDEP) was even a pos­si­bil­ity.

Now mum Rachel, dad Bharat, older sis­ter Amy and Amy’s boyfriend James are trav­el­ling over 6,000 kilo­me­tres in a tuk tuk to raise aware­ness of SUDEP and the risks as­so­ci­ated with it, to help re­duce the num­ber of pre­ventable deaths.

I in­ter­rupted the fam­ily’s trav­els to speak to Amy and find out more about their unique fund-rais­ing mis­sion.

“We started think­ing about a project that we could do in Emily’s mem­ory about a year ago. We re­ally wanted to do some­thing as a fam­ily. We’ve al­ways been very tight-knit, so it felt ap­pro­pri­ate to do some­thing for her to­gether.

“We wanted it to be some­thing bright and colour­ful which would re­ally grab peo­ple’s at­ten­tion, as well as their hearts and minds.”

The fam­ily came up with the idea of driv­ing a tuk tuk from Lon­don through Europe as a way of high­light­ing the num­ber of deaths that are caused by SUDEP ev­ery week.

“In the UK, twenty-one peo­ple die epilepsy-re­lated deaths each week, so we thought, why don’t we drive through twenty-one coun­tries?

“We were con­sid­er­ing that idea, and that led us to a fi­nal desti­na­tion of Turkey, which is per­fect be­cause Is­tan­bul is where East meets West, and Emily and I are half In­dian, half English. So it seemed like a lovely nod to our her­itage. Be­ing half In­dian is also the rea­son we chose a tuk tuk in the first place.”

Set­ting off from the UK on Septem­ber 8, the Su­marias face six weeks of trav­el­ling be­fore they reach Turkey.

The fam­ily have gar­nered a huge amount of sup­port, both through their so­cial me­dia ef­forts and from their fam­ily and friends – many of whom will be there to cheer them on when they even­tu­ally reach Is­tan­bul.

I ask Amy what it’s been like for the fam­ily, trav­el­ling such a dis­tance to­gether in cramped con­di­tions.

“For the first week or so we were find­ing our feet and get­ting into a rhythm. I haven’t spent this much time with Mum and Dad since I went to univer­sity!

“It’s been so lovely be­ing all to­gether for the ride, and we’ve spent so much time talk­ing about Emily.

“We were in Slove­nia the other day. They had these rick­ety bridges that went across the river and it re­minded us of a time in Kenya when we had to cross this re­ally shaky bridge over crocodile­in­fested wa­ters. You could only cross over one per­son at a time.

“Emily was only about six at the time, and Mum told her that she must hold on to the sides, but as soon as she got on she re­moved her hands and just strolled along! It’s been so nice to pause and re­flect on all of the amaz­ing mem­o­ries we have of her.”

When I talk to Amy, the fam­ily have just ar­rived in Mostar, hav­ing driven for nine hours along the windy Croa­t­ian coast­line. I ask her how the tuk tuk fares in chal­leng­ing con­di­tions.

“When you drive up­hill it is in­cred­i­bly slow, but it will even­tu­ally get you to the top! Windy con­di­tions are dif­fi­cult to drive through, too, es­pe­cially on coastal roads.

“When the wind blows re­ally hard, it pushes the tuk tuk side­ways be­cause it’s so light. Those have been the most stress­ful drives, but most of the time it’s been a dream.”

Al­though the fam­ily ad­mit to be­ing quite tired af­ter al­ready driv­ing an epic dis­tance, Amy says that their scenic jour­ney through Europe has been fas­ci­nat­ing – and a spe­cial way to re­mem­ber Emily.

By the time they reach Turkey, the Su­marias and James are hop­ing to have raised a to­tal of £120,000, which will be do­nated to the char­ity SUDEP Ac­tion.

“SUDEP Ac­tion was a real life-line for us when Emily died. They spe­cialise in help­ing fam­i­lies who have suf­fered a bereavement due to epilepsy, pro­vid­ing free coun­selling – some­thing which I ben­e­fited from hugely.

“It is an amaz­ing char­ity. They help to get re­search off the ground, sup­port fam­i­lies like ours and cre­ate aware­ness of SUDEP. And so much of our trip is about just that.

“We can raise money and know the ex­act met­rics of that, but we’ll never know how many peo­ple we’ve helped by cre­at­ing more aware­ness of SUDEP. Even if we’ve just helped one per­son, we’ll have made a dif­fer­ence.”

For more in­for­ma­tion about the Su­marias’ tuk tuk jour­ney, or to do­nate to their fund-rais­ing cam­paign, visit https:// tuk­tuk­to­turkey.com/. ■

The Su­maria fam­ily and James are hop­ing to raise £120,000.

The jour­ney will take six weeks.

The Su­maria fam­ily all to­gether.

Emily Su­maria in hap­pier times.

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