Taylan was our beautiful seven-year-old son, who was sadly taken away from us on 19th August 2009.
Initially free from obvious symptoms, Taylan suddenly developed double vision in his right eye. Five days later, on 24th October 2008, medical experts finally discovered an inoperable and incurable brain tumour. It was located in the brain stem and called Diffuse Intrinsic Pontine Glioma (DIPG).
When Taylan passed away, our whole lives were turned upside-down and they remain that way. Our view on the world was that ‘Our baby has gone, so why should we care about anyone else?' That was until we realised that more children and people under the age of 40 die of a brain tumour than from any other form of cancer. We feel that this reality isn't being recognised enough.
With more than 120 different types of tumours requiring different types of treatments, brain tumours are a notoriously difficult disease to diagnose. It is a devastating thing to go through, and nobody deserves it. The ‘not knowing' is so painful and nothing is ever certain when it comes to brain tumours. You can be told one thing one day and another the next. We saw yet another specialist paediatric neuro-oncologist just six days before Taylan passed away, at which time we were told that he had three-to-four months to live.
The fact that research into the cause of brain tumours is underfunded is heartbreaking and the progress is unfortunately very slow, with just 14% of sufferers surviving beyond five years (compared to over 50% for all other cancers). They can occur in anyone but are increasingly affecting the younger population.
Brain tumours receive less than 1% of the national spend on cancer research in the UK. They cannot be prevented as their cause is unknown, leaving families shattered and torn over the loss of their loved ones. Children are losing their mummies, daddies, sisters, brothers, grandparents and friends. Parents are losing their children - and no parent should have to say goodbye to their child. It is hard to accept that a child may not outlive their parents. Sadly, we know this feeling only too well and struggle to accept it.
During the 10 months after Taylan was diagnosed, we found it so frustrating that no one was able to give us any answers, or provide the breakthrough that we so desperately sought. From the doctors' perspective, this was also frustrating because they had nothing else to offer. The price we had to pay was losing our beautiful and precious son. We will never go back to being a ‘normal' family again, as Taylan is no longer with us. We miss him so much and the pain will never go away - nor will he ever be forgotten. But we also feel that we cannot allow this to continue. If one day an answer or cure is found, if one day we were able to be part of saving someone's life, whilst it would be too late for us, it may be just in time for another family.
We need to start somewhere. So, with the help of friends and family, we founded Taylan's Project in January 2010, to commemorate Taylan's short and happy life and continue, with his legacy, to help others. As an umbrella group part of Brain Tumour Research, our aim is to raise awareness and much-needed funds in order to help find a cure for this devastating illness.
We also work closely with the John Radcliffe Hospital in Oxford and provide UK holidays for terminally ill children and their families, as well as financial support for those who need it. Time away from treatments and hospital visits is crucial when you are dealing with these situations. Our family holidays were our most treasured times and will remain with us forever - just seeing Taylan's face on holiday, constantly smiling and happy, was such an uplifting feeling. It's also very important for siblings and parents to have that time. Siblings especially suffer whilst you go to hospital, as they are generally cared for by relatives and friends. They can feel isolated and left out. We just want to help a little and relieve some of the pressures these families face each day by creating memories and giving them a helping hand.
The majority of our work focusses on research into brain tumours. Brain Tumour Research is a UK-based charity dedicated to raising funds for research into the prevention and treatment of brain tumours, as well as ultimately finding a cure. They aim to do this by establishing seven Centres of Excellence at UK universities, where some brain tumour research is already being carried out. Their mission is to raise £7 million per annum in order to make a difference and improve outcomes for brain tumour patients.
Taylan was such a caring boy who always wanted to help others. Please help us so that we can start making a difference.
This devastation needs to stop, and with significant funds we can improve the research into the causes of, and a possible cure for, brain tumours.