Taylan Rawlinson's vital legacy to help beat brain tumours
PUBLISHED: 15:50 24 March 2015 | UPDATED: 16:01 24 March 2015
Life has many twists and turns, but some can turn everything upside down when least expected, Jan Raycroft discovers
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.
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.
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.