When 15-year-old Hugo Reece suddenly passed away after a family day out to Legoland, his family are determined to keep his legacy alive through fundraising – with one question at the forefront of their minds
After having the “best day ever”, 15-year-old Hugo Reece started to feel unwell on the 75-mile car journey home from Legoland, and suddenly died the following day. Born with CHARGE syndrome, which meant he was deafblind, Hugo felt fine during his visit to Legoland Windsor with his mum and four younger siblings, and fully enjoyed his day on the rides to finish off a fun-filled half-term week.
Reece became unwell in the car home, and hospital doctors discovered he had a twisted bowel and, though they tried to operate, by the time he’d shown symptoms it was already too late to save him and he died the following day, Monday 4 November. Now his mum Claire Reece, 45, is running the London Marathon so people keep talking about her “special boy”.
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The family, from St Neots, in Cambridgeshire are doing all they can to make sure Reece’s legacy lives on, and Claire is taking on the London Marathon for Great Ormond Street Hospital Charity (GOSH Charity), while her partner, Steve Childerley, 51, is running alongside her for national disability charity Sense. Both organisations played a major part in Hugo’s life.
As they continue to fundraise for GOSH and Sense, Claire lives her life with one question at the forefront of her mind: “Would Reece enjoy this?” Reece achieved phenomenal things in his short life – including visiting Downing Street with his mum to campaign for disabled people’s rights with Sense and carrying the Commonwealth Games baton.
Claire said her main motivation is to keep her son’s memory alive and are making sure all of their hard fundraising efforts are all “Hugo related” – with his love of singing inspiring a karaoke night on 5 April at Eynesbury Rovers Football Club where his funeral party was held. She explained: “I’m telling everyone, ‘This London Marathon run is for Hugo’. I’m raising awareness for my son because he was the most special person and I don’t want people ever to stop talking about him.
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“When Hugo died, it was very sudden. We always knew he could be life-limited because he had CHARGE syndrome but, at that moment, it was very unexpected. We’d had an earlier scare in April 2024 when Hugo went into Great Ormond Street for routine surgery and he had a cardiac arrest. He was on life support for a few days, but they took such good care of him and in typical Hugo fashion, we were fine once we got him up and running again.”
The mum said it made her appreciate a little more how precarious life can be, and decided they should do more new things together, which is what sparked the idea of going to Legoland for the day. “It was the end of half-term and we now say that Hugo did a farewell tour and spent the week with every single person he loved.”
Just before his death, Hugo had spent time with his dad in his favourite place in Norfolk, enjoyed time with all his family, had cake at his Grandad’s birthday, and spent a couple of nights with his carers who he absolutely adored. “Then on Sunday, we did Legoland all day. My other children absolutely love the fact that Hugo had the best day here. But on the way home, he got poorly,” Claire explained.
“I’d already signed up to do the London Marathon and I feel really strongly that something good can come out of Hugo’s dying – I really want to do this in his memory. I want every part of this marathon to be Hugo-related.”
In order to do this, Steve is fundraising for Sense, the disability charity that took Hugo and his younger siblings on fun family days like skiing and got them involved in campaigning for disabled people, while Claire is fundraising for GOSH who looked after Hugo since he was born.
Claire added: “When it comes to fundraising ideas, I ask myself, ‘Would Hugo have found this good fun?’ So Steve and I are doing a joint karaoke night in the big hall at our local football club where we had a huge ‘Hugo party’ after his funeral. Hugo loved singing.” Despite Hugo being completely non-verbal, his mum recalled how he’d get a microphone on the karaoke machine and, as far as he was concerned, he was singing.
The family are also selling lots of chocolate brownies as they were his favourite, and his inspirational story has attracted the attention of TV and radio presenter, Chris Evans, who recently joined Claire and Steve on a training run.
In response to the families determination of fundraising, Owen Callaghan, Head of National Events at Sense, said: “Hugo and his family are all very important to Sense. We’ve known them since Hugo was very young and were devastated to hear of his sudden death last November.
“We’re so proud that Claire is running the London Marathon and that her partner Steve is running alongside her for Sense. By doing this, Hugo’s family will help other disabled children, young people and adults to experience the world and we’ll be cheering them every step of the way.”
Gabi Field, Deputy Director of Public Fundraising at GOSH Charity, said: “On behalf of everyone at GOSH Charity, I want to say a big thank you to Claire and Steve as they prepare to take on the London Marathon in memory of Hugo. All the money raised will help GOSH Charity support the hospital’s most urgent needs, funding vital support services, research and cutting-edge medical equipment. We’re wishing Claire and Steve the best of luck ahead of this incredible challenge.”
You can sponsor Claire here and Steve here.