Grieving mum who lost 'dream child' to brain tumour wants to help find cure

Carole Crayford's son Michael died in March 2017 at the age of just 13. Credit: Brain Tumour research

A grieving Kent mother whose "dream child" died six months after being diagnosed with a rare type of brain tumour is taking part in a charity challenge.

Carole Crayford's teenage son Michael died in March 2017 at the age of just 13.

She is now raising money for Brain Tumour Research by taking part in a 'marathon in a month' fundraiser.

Michael was diagnosed with an immature teratoma, a type of intracranial germ cell tumour (GCT), in September 2016 after suffering with sudden headaches, blurred vision, sickness and balance problems.

"He'd only been back at school for three days when he started complaining of having headaches and blurred vision," said Carole, a nursery practitioner from Gillingham.

"It came on so suddenly that I took him straight to the doctor, then to the optician and finally to A&E, but no one could find anything wrong so I had no option but to take him home."

"The next day he got really bad; he was vomiting and couldn't balance properly, and he wasn't a boy who complained or got ill often, so I took him back to A&E.

Carole Crayford’s teenage son, Michael, was diagnosed with an immature teratoma in 2016. Credit: Brain Tumour research

"I told them I knew he wasn't right and I refused to leave until they did tests. Finally they relented and did a CT scan and the woman came out looking really ashen and said: 'we've found a brain tumour'."

Michael underwent five brain surgeries, intensive chemotherapy and radiotherapy but died six months later, in March 2017.

Carole, who also lost a baby to stillbirth, said: "We got taken to what we used to call the 'room of doom' because that's where they always gave us bad news, to be told they thought Michael should have a rest because there was nothing more they could do."

"We could have kept on going, I guess, but that was no life for Michael. It was hard but we had to do the right thing by our boy. We had 13 amazing years with him before he passed away. He was so caring and easy-going, just a dream child really."

The 48-year-old, who is married with twins, added: "I look back now and wonder how I got through it but somehow you find the strength, especially when it's your child."

"I lost count of the times I came over faint and almost passed out because I wasn't looking after myself properly. I was tired from not sleeping, stressed about all the changes with Michael's condition and I often forgot to eat."

"It was a case of having to juggle looking after the twins with managing Michael's care and taking it in turns to sign the consent forms for his operations."

Inspired by her son’s memory, Carole signed up to take part in the Brain Tumour Research charity’s Jog 26.2 Miles in May Challenge. Credit: Brain Tumour research

"But he was so strong. He used to tell me that, if he didn't make it out of surgery, he was the only one who knew what my heart sounded like from the inside and to remember how much he loved me."

"I don't think he knew too much about what was going on at the end, which I'm glad about because it was really very intense."

Inspired by her son's memory, Carole signed up to take part in the Brain Tumour Research charity's Jog 26.2 Miles in May Challenge.

She said: "I couldn't wait for the challenge to start and have really loved doing it. I put on a lot of weight when Michael was ill but since then I've lost three stone and try to keep fit."

"I use walking as my therapy and try to do about five miles every time I go out. Often if my friend comes with me we chat and don't realise how much we've done."

She added: "It's been five years since Michael died but sometimes it still feels like five minutes. The grief never ends but some days are better than others and I know I've got to carry on because I can't let Michael down."

"Brain tumours are much more common than people think and it's ridiculous how little funding the government gives for research into the disease."

"We need to raise more awareness because otherwise it'll just keep getting brushed under the carpet and people will continue to think, like I did, that it'll never happen to them."

"Like Michael said: 'we've got to help people because one minute you're sailing along and the next it can all change'."

Charlie Allsebrook, community development manager for Brain Tumour Research, said: "Michael's story is heart-breaking and serves as a stark reminder of the fact brain tumours kill more children and adults under the age of 40 than any other cancer yet, historically, just 1% of the national spend on cancer research has been allocated to this devastating disease."

"We're determined to change this and are so grateful to all our supporters for helping us to continue funding vital research and for getting us closer to finding a cure. We wish Carole the best of luck with the rest of her challenge."

Brain Tumour Research funds sustainable research at dedicated centres in the UK.

It also campaigns for the Government and the larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure.

The charity is calling for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.

It is also campaigning for greater repurposing of drugs.