The family and friends of a much-loved Mansfield schoolboy who died from complications after a bone marrow transplant have raised almost £2,500 for the charity that helped him in the last 18 months of his life.

Thomas Burton had a rare lifelong illnesss, Chronic Granulomatous Disorder (CGD), which affects between four and six people per million in the UK. The rare disorder has only one dedicated specialist nurse in the UK, Helen Braggins, whose work is funded by the charity, CGD Society.

Thomas’ mum, Michaela Burton, said that despite his illness, Thomas, a former Samworth Church Academy pupil, recognised the work his nurse did was valuable not only to himself, but to other CGD sufferers .

He was determined to raise money for her position because her work was not funded by the National Health Service.

Michaela said: “Tom was keen to keep the CGD specialist nurse funded. It was important to him and I want to carry on that fundraising for Tom.

“Helen made such a difference to the last 18 months of Tom’s life and the work that she does with the charity is immeasurable.”

Michaela said Helen became a good friend of the family. “She supports families and is worth her weight in gold.
“I don’t think she realises, and I don’t think the CGD Society realises either, how much she goes above and beyond her job description,” said Michaela.

The culmination of the fundraising efforts by Thomas’ friends saw Helen visit St Mark’s Church and Samworth in Mansfield to receive two cheques totalling £2,465.41.

Mr Oliver Foreman, of St Mark’s, presented a cheque for £1,350 raised by the friends and family of Thomas.

He said: “Thomas was a member of the church, the Young Lions and the Boys’ Brigade here and we were all aware of his illness.

“We decided to raise money with the view to helping Tom as he got better.

“Unfortunately, Thomas died and we consulted the family, who said we should continue in our efforts and give the money to the CGD Society.

“We did various things, all fun events in Tom’s name. We want to raise awareness of the condition because it is so rare that it sometimes goes unrecognised, even by doctors.”

More fundraising took place at Samworth. Vice-principal Mr Richie Wheatcroft ran the Edinburgh Marathon, helping to raise around £750 towards the total of £1,151 collected by the academy.

He said: “It was important for me to help. At the time I ran the marathon Tom was undergoing treatment and was receiving great support from his CGD nurse.

“Tom wanted us to help support that position, not only for his own treatment, but for others because the CGD nursing job is not funded by the NHS. Once we knew this we had to do all we could to help.”

Thomas’ friends at the academy raised money in various ways. Kyrsty Francis, his teacher, said: “We had brother and sister, Connor and Caitlin Doy, selling handmade wristbands and another student, Nicole, held a cake sale.”

Michaela said there were plans to continue raising money. “We have already raised coming up to £5,000 in Tom’s name,” she said.

“Our friend, Jamie Claricoates, did the London Marathon to help. We are all keen to continue supporting the CGD Society as the work they do is very important.”

Thomas’ friend, Connor Doy, said: “Thomas was good at explaining what was happening to him. We think it’s important that people know why we need to raise this money in his memory and to learn about CGD.”

Michaela Burton, Caitlin Doy (14), Helen Braggins, Mr Richie Wheatcroft, Connor Doy (13) and Kyrsty Francis.