CHRISTMAS OFFER Subscribe to Berkshire Life today CLICK HERE

Taylan Rawlinson’s vital legacy to help beat brain tumours

PUBLISHED: 15:50 24 March 2015 | UPDATED: 16:01 24 March 2015

Chirpy Taylan was a very bright, caring, sensitive and loving child, who touched many lives

Chirpy Taylan was a very bright, caring, sensitive and loving child, who touched many lives

Archant

Life has many twists and turns, but some can turn everything upside down when least expected, Jan Raycroft discovers

TV star Ian Reddington, a patron of the charity with the Rawlinson family and Sue Farrington Smith. Photo: Gary SchwartzTV star Ian Reddington, a patron of the charity with the Rawlinson family and Sue Farrington Smith. Photo: Gary Schwartz

Figen Rawlinson has never forgotten the moment an oncologist knelt beside her chair and gently began to explain why “I’m afraid there’s nothing we can do” really meant just that – and was the unquestionable fate of her delightful eldest son, Taylan.

“I was saying ‘There has to be something, somewhere’. And thinking ‘Don’t just tell me my son, my little star, has a brain tumour and that’s it’. What he said has always stuck with me.

“He told me that 30 years previously he would have had to say the same to the parents of children with leukaemia, but research and medical breakthroughs meant this was no longer the case. These days, if it had been leukaemia, Taylan and we would have gone through Hell and back, but the odds were that he would have survived because it could be treated ‘like a very bad cold’.

“You want some hope, a chance. And wishing that your child ‘only’ had leukaemia instead, that’s how mad your mind can go.”

That diagnosis in the early autumn of 2008 came within a week of Taylan’s family and teachers noticing that one of his eyes did not look straight. For Figen and her husband Andy, who live in Calvert Green, Aylesbury Vale, it was the moment their life was turned upside down forever.

So began a worldwide search for second and umpteenth opinions. Figen, a graduate in international business and marketing who’d worked for global giants, put her experience to good use, channelling the despair which became frustration and anger into finding something, anywhere that might help Taylan, then just seven.

If needed she timed her life to match working hours in Australia, tracked down American specialists, and saw more of the internet than anyone could want. And what she found, fuelling that anger, was that research into the 120 or so different types of brain tumours, the causes, treatments and any possible cure, was way behind that of most other cancers.

Kaya and Altay Rawlinson add tiles to a Wall of Hope in memroy of their brother. Photo: Gary SchwartzKaya and Altay Rawlinson add tiles to a Wall of Hope in memroy of their brother. Photo: Gary Schwartz

Today, she also talks of a dilemma none of us would wish to face. The clock was ticking for Taylan and the only way to slow it down while they sought a ‘miracle’ would be for him to undergo treatments such as chemotherapy and radiotherapy that can diminish quality of life for brain tumour patients. “So there you are, putting your child through something that can change them forever. Choosing, say, radiotherapy, knowing it might fry their brain, but what else do you have?”

What the Rawlinsons had was just a few months. Taylan’s Diffuse Intrinsic Pontine Glioma tumour slowly robs children of their motor functions, resulting in partial paralysis, loss of voice and sometimes sight, before finally causing an inability to eat or breathe. They are normally fully aware of their decline, often until their last day. So another tragic issue to deal with, trying to balance honesty with hope while telling an anxious child that doctors were trying to make them better.

There were some bright moments during that time, which remain in their memories. A quiet Christmas spent with all the family, a wonderful holiday in Dubai, Taylan saying “Everything is one again, I can see properly” when a squint operation temporarily corrected his sight.

But he became weaker, struggling with speech and balance, and Figen and Andy were told in mid-August that Taylan had perhaps three or four months to live. In fact he could battle on for just a few more days, leaving them on 19 August, 2009.

Figen beat herself up, even for daring to sleep while her son did, because these were now moments lost forever. She had days when it felt impossible to get out of bed, but the support of Andy and need to care for Taylan’s younger siblings, Kaya and Altay, started to pull her round.

However, the anger over limited research, drug and therapy treatments wasn’t gone. This time she channelled it into setting up Taylan’s Project, now an umbrella group part of Buckinghamshire-based national charity, Brain Tumour Research.

The project focuses on funding vital scientific and laboratory-based research to improve the quality of life for brain tumour sufferers and to aid the search for better treatments, with better outcomes. They raise awareness of the illness with an ultimate ambition of finding a cure.

The Rawlinson family at a fundraising eventThe Rawlinson family at a fundraising event

Since then the Rawlinsons have raised around £225,000 and have witnessed the launch of new research projects. As a result Figen often finds herself talking to desperate parents who still have to face what she went through, so that raw pain is never far away.

Her wish is that one day the conversation will be “This works best” rather than “There’s nothing we can do.”

Our readers can help by supporting events, making donations and raising awareness. Find your best way in this feature.

***

Get those splendid hats out for a day of fun and fundraising

Supporters across the nation are taking part in Wear A Hat Day on 27 March. People from businesses, schools, universities, shops, offices, racecourses and clubs, as well as celebrities and MPs, will don beanies and boaters, top hats and trilbies, fascinators and fedoras, and make donations to Brain Tumour Research.

Funds will be boosted by other hat-themed events such as raffles, bake sales and sponsored challenges.

The sixth Wear A Hat Day is inspired by the 16,000 people who are diagnosed each year and it is dedicated to the memory of those lost Brain tumours kill more children and adults under the age of 40 than any other cancer… yet just 1% of the national spend on cancer research is allocated to this devastating disease.

The charity is urging people to rally their organisations and contacts to get involved in Wear A Hat Day by wearing a hat and making a donation, buying specially designed pin badges or a limited edition brooch as well as wristbands, baseball caps, plush top hats and even a hat for your car grille.

Full details and how to register for a fundraising pack, as well as quizzes and competitions are available from www.wearahatday.org or call 01296 733011. Text donations can be made by texting HAT to 70660.

***

About Taylan’s Project and Brain Tumour Research

Carol Robertson, Head of Community Fundraising for Brain Tumour Research, says: “Taylan’s Project was the first fundraising group set up under the Brain Tumour Research umbrella back in February 2010, and Figen has been tireless in her efforts to establish an incredible legacy for Taylan.

“We need to raise some £7 million per year to achieve our mission of establishing seven successful research centres across the UK and to set the stage for finding a cure for brain tumours in the next decade. We can only achieve this through the support of fundraising groups like Taylan’s Project and our community of fundraisers throughout the UK.”

Brain Tumour Research funds a pioneering network of research Centres of Excellence across the UK.

www.braintumourresearch.org and www.taylansproject.com

0 comments

Welcome , please leave your message below.

Optional - JPG files only
Optional - MP3 files only
Optional - 3GP, AVI, MOV, MPG or WMV files
Comments

Please log in to leave a comment and share your views with other Berkshire Life visitors.

We enable people to post comments with the aim of encouraging open debate.

Only people who register and sign up to our terms and conditions can post comments. These terms and conditions explain our house rules and legal guidelines.

Comments are not edited by Berkshire Life staff prior to publication but may be automatically filtered.

If you have a complaint about a comment please contact us by clicking on the Report This Comment button next to the comment.

Not a member yet?

Register to create your own unique Berkshire Life account for free.

Signing up is free, quick and easy and offers you the chance to add comments, personalise the site with local information picked just for you, and more.

Sign up now

More from People

Yesterday, 16:30

The impressionist, actor, singer, writer and now pianist shares some thoughts on everything from music to the less welcome sounds of Heathrow before appearing in Berkshire

Read more

Unsurprisingly a common question our clients ask during their annual reviews is: “What effect will Brexit have on my investments and future plans?”

Read more
Tuesday, October 9, 2018

Following in Harry and Meghan’s footsteps, Princess Eugenie will marry this October in Windsor Castle’s famous chapel

Read more
Tuesday, September 18, 2018

Ascot knows how to raise a glass or two, but might need a double as Absolutely Ascot is filmed, which seems a long gallop from reality in East Berkshire

Read more
Monday, September 10, 2018

Stoke Park’s chef has his first cookbook out, so you create culinary masterpieces at home to impress family and friends

Read more
Monday, August 20, 2018

Drew Burnett’s path to becoming a wildlife photographer is as extraordinary as the images he now captures for us all to enjoy

Read more
Monday, August 13, 2018

Some of the best ideas grow from a chat at the family dining table, and this one blossomed into products now delighting mothers across the country

Read more
Tuesday, August 7, 2018

While the sounds of national anthems as rowers collected gold medals yet again was once music to his ears, veteran coach Mike Spracklen is ringing the changes

Read more
Tuesday, July 31, 2018

The former GB athlete shares the reasons why he loves returning home to Stockgrove, the beautiful spot you too could visit this summer

Read more
Tuesday, July 31, 2018

Jax Meehan knows quite a bit about racing ahead, so when she tired of heading to the capital for her favourite ‘smart casual’ styles and labels she set up shop in her home town

Read more
Monday, July 16, 2018

Paul Kidby was mesmerised by the work of Bucks author Terry Pratchett and one day a phone call would lead to an extraordinary meeting of minds for the next two decades

Read more
Tuesday, July 3, 2018

A Wokingham furniture designer recalls the moment he decided to tell his wife – and mother of their two young children – that his commuting days were coming to an end

Read more
Tuesday, June 5, 2018

We’ve chosen the visits marked on our calendar, but you can plot your own creative path through the work of some 500 artists and makers in 200 studios this month

Read more
Friday, May 25, 2018

In some cases a child’s ‘work of art’ can be the perfect therapy to help them cope with life’s difficulties and build healthy relationships

Read more

Newsletter Sign Up

Berkshire Life weekly newsletter
Sign up to receive our regular email newsletter

Our Privacy Policy


Latest Competitions & Offers

Topics of Interest

Food and Drink Directory

Local Business Directory

Property Search