A heartbroken family say they will keep their brave son’s memory alive by creating a lasting legacy in his name.

Nine-year-old Thomas Laurie, of Bicester, was one of about 10 children in the UK to suffer from a rare genetic condition and died on February 19 at Oxford’s Helen and Douglas House hospice, surrounded by his family.

As his funeral took place last Friday at the Church of the Immaculate Conception, Bicester, Thomas’ friends at Langford Village School shared cakes in his memory.

Staff at other schools in Bicester as well as Thomas’ friends and family also held separate tea parties to honour him.

Thomas was diagnosed with Cockayne Syndrome, which causes premature ageing, in 2007. The degenerative condition, which prevents normal growth and affects the nervous system, meant that his life expectancy was severely shortened.

His devastated parents Richard and Catherine, 42, and his sister Ellie, 12, paid tribute to their “little ray of light”.

Mr Laurie, 44, who works at King’s Meadow School in the town, said: “We knew that this was going to come at some point with Thomas because of the nature of his condition.

“Obviously even when you are given days or weeks it goes very quickly and you are still trying to get your head around it.

“He did live life to the full ,but the last couple of years have been hard for him.”

The Oxford Times:

  • Thomas, aged seven, and his mum meeting the Duchess of Cornwall at Clarence House, London, in 2012

Mr Laurie, a former assistant headteacher at Banbury’s Hanwell Fields School, added: “He was brave and soldiered on.

“He was a little ray of light, and was beautiful inside and out, and that’s how we’d like him to be remembered.

“It’s going to be difficult going forward but you have to do it. We want to remember Thomas through supporting his three charities.”

Thomas’ family will focus their grief on raising money through the campaign Running for Thomas Laurie, which will fundraise for three charities that supported the schoolboy.

Helen and Douglas House, support group Amy and Friends Cockayne Syndrome UK and Oxfordshire children’s respite nursing charity Rosy will be the beneficiaries of the money.

People are being encouraged to take on a physical challenge to raise money in the youngster’s name and £1,500 was donated to a collection at Thomas’ funeral.

Staff and pupils at Langford School in Bicester have also collected cash for Thomas’ charities, and Bicester Athletics Club, where Ellie is a member, raised cash through a cake sale.

Through Helen and Douglas House, Thomas was invited to decorate the Christmas tree at Clarence House, the London home of Prince Charles and Camilla, Duchess of Cornwall, in 2012.

In 2011, Thomas had met the Princess Royal, after he and his family were asked to represent the hospice when it won the prestigious Queen’s Award for Voluntary Services.

The family are now in the process of setting up a website where people can sign up to complete challenges for the charities.

For more information search for the group ‘Running for Thomas Laurie’ on Facebook.