Mum fundraises to keep son's memory alive a year on

Hugo was a campaigner for the rights of people with disabilities, who would take on any challenge, said charity Sense

A mother who has won a charity's fundraising award says she hopes it will encourage people to talk about her son, who died aged 15.

Claire Reece, 46, from St Neots, Cambridgeshire, said: "It's a very taboo subject when a child dies. People don't know what to say."

Hugo died suddenly on 4 November last year. Ms Reece and her partner completed the London Marathon in his memory in April, raising £8,200.

The funds were shared between Great Ormond Street Hospital Charity and disability charity Sense, which awarded the couple its fundraiser of the year award.

The couple took a photograph of themselves with Reece while they ran the London Marathon

Ms Reece and her partner Steve Childerley, 52, said they wanted to give back to the two organisations which had played a big part in her son's life.

Hugo was a campaigner for the rights of people with disabilities, visiting Downing Street with Sense, carrying the Commonwealth Baton and enjoying skiing on Sense family days.

He was born with CHARGE syndrome, a rare genetic condition that affects multiple organ systems, and was deafblind.

Claire Reece said the family talk about Hugo every day and wished he was here, causing havoc

Ms Reece said one of the hardest thing about his death was many people's reluctance to continue talking about him.

"The first anniversary of Hugo dying was surreal – it still doesn't seem real," she said.

"It's a tough situation because a lot of people don't talk about Hugo now.

"But most parents, myself included, find that really hard because all we want to do is talk about our children."

Hugo was suddenly taken ill on the journey home from Legoland Windsor, where he had spent the "best day" enjoying the rides with his mum and four younger siblings.

She added running the London Marathon every year and fundraising for Sense means she has a reason to talk to people about Hugo

James Watson-O'Neill, chief executive of Sense, said: "The money they so successfully raised is helping us support more disabled children, young people and adults with complex needs.

"But most of all, we're delighted to keep our strong connection with Hugo's family."

Ms Reece said: "Winning this Sense Award now gives us the chance to focus and tell people about Hugo.

"If it hadn't been for him, I wouldn't ever have become a fundraiser."

The couple have already signed up for next year's London Marathon.