Est. read time – 5-6 minutes
A mum whose son died suddenly after living with a rare genetic condition has described him as ‘unique, tenacious and intelligent’ – remembering his zest for life and love of people.
Hugo Reece was born with CHARGE Syndrome – a disorder caused by gene mutations – and died in November 2024, aged 15. He and his family were supported by East Anglia’s Children’s Hospices (EACH) at Milton.
EACH became part of their lives when he was two, going on to enjoy short breaks at the hospice, spending lots of time on the care floor and having many fun play therapy sessions at home in St Neots.
After his death at Hinchingbrooke Hospital, near Huntingdon, Hugo’s body was moved to Milton. It gave his family three precious days to create memories and start navigating their grief.
Sisters Martha, 15, and Hilary, nine, and brothers Eric, 12, and Etienne, eight, continue to enjoy sibling days, while mum Claire benefits from fortnightly counselling sessions.
“Hugo was a fantastic young lad who loved life and being around people,” said Claire.
“He could be a tinker, and he was very determined. His tenacity was something else, and I don’t think I’ll ever meet another child like him. He didn’t have an off button!
“He could be hard work and difficult to manage, but that was all part of his unique personality and what made him so special.
“He never let his condition stop him or hold him back. He didn’t know any different and thrived on happiness. He loved making people laugh.
“Hugo was also incredibly clever – a bright, intelligent boy who had a photographic memory and was great at remembering people’s birthdays. In that respect, I’ve fallen apart since he died and am lost without him.
“He was becoming more independent and starting to thrive, which is why his death came as such a shock.”
After being born with CHARGE Syndrome – a condition that affects one in 10,000 babies worldwide – Hugo, who was deaf, non-verbal and communicated using sign language, had a challenging start to life, including undergoing heart surgery at London’s Great Ormond Street Hospital.
More ‘blips and complications’ followed over the course of the next seven years, but his health was starting to improve just as lockdown hit in 2020. Hugo was a regular at his weekly junior parkrun and loved ice cream, hot chocolate and chocolate cake – three of his favourite things in the world.
He also loved browsing in charity shops and particularly enjoyed buying lunchboxes and rucksacks – building up quite a collection and using a different one every day.
Comparatively speaking, he was thriving, and he and his family had lots of fun together in his final year, including a holiday in Dorset.
The good times continued during the October half-term of 2024, including a memorable day at Milton and a trip to Legoland. However, things were about to change forever.
Half an hour into the drive home from Legoland, Hugo became very poorly. Claire had to call an ambulance and he was taken to A&E at Hinchingbrooke.
It was initially thought he had sepsis, and his symptoms were managed until the following morning, at which point things went rapidly downhill.
“Within 24 hours, we went from having the best day ever to him being gone,” said Claire.
“I still don’t understand how or why everything happened so quickly. When I look back at his smiling face in my photos from that day, there was no clue about what was to come.
“When he died, my first instinct was to want to take him home, and I didn’t want him left in a mortuary.
“When they said that wouldn’t be possible, I asked if we could take him to Milton instead. Someone went off to check and came back and said ‘yes’.
“For me, that was amazing, and we stayed for three days.
“He was taken into the room where he normally stayed at the hospice, and it was so comforting.
“I was worried about how I’d feel seeing him, but he looked so incredibly beautiful. Just like Hugo.
“Nights could be fitful, and he also had facial palsy, which meant he’d often sleep with one eye open. Now he just looked peaceful.
“Our family and his carers came to visit and say their goodbyes. It was certainly emotional, but being at the hospice gave both us and them that opportunity.”
EACH continues to be a big part of Claire’s life, and she is open about her counselling sessions at Milton.
“I wouldn’t manage without them,” she said.
“Having someone I can talk to and be honest with, who understands my situation, is invaluable.
“I can’t talk that openly to many people because they don’t want to hear it.
“The death of a child makes them uncomfortable because they don’t want to imagine it or relate it to their own lives and families.
“I understand to a point, because it’s the worst thing that can possibly happen to anyone, but that means it becomes a bit of a closed subject.
“If I were to be honest about my emotions, lots of people wouldn’t know how to handle it, so it becomes easier just to say I’m OK.
“As a result, you become good at putting a front on and saying you’re alright, when, in reality, nothing could be further from the truth.”
Despite the emotion of the last year and a half, Claire says she tries hard to keep smiling – for Hugo’s sake.
“I miss Hugo, and I miss what we had together,” she said.
“I find it hard not knowing what the next chapter of his life would have looked like.
“Fifteen months on, I still wake up every morning and, for a second, think it was all a terrible dream. A nightmare. Then the reality sets in again.
“When I’m asked how I cope, I say I don’t have a choice.
“It’s a case of sink or swim, and I’m very lucky to have my other children and (partner) Steve. They keep me going on my bad days.
“We have to remember how lucky we are. We’ve still got each other, and we focus on doing things and enjoying life as best we can.
“It makes you realise how precious life is and how quickly it can change. Your whole life can change in a split second.
“I’ve got a new life now, and it’s very different from before. My life revolved around Hugo and his complex needs, but now our family dynamics have changed and I’m on a completely new parenting journey.
“I could so easily give up and sometimes you feel like doing that. When Hugo died, I had no idea how I was going to continue to function.
“He was my first child, and I’d cared for him from the word go. Along with my other children, he was the reason I got up in the morning. He was my purpose, and I didn’t know what I was going to do without him.
“I still don’t know, to be honest. However, Hugo couldn’t bear to see me upset. It would make him sad.
“I could easily spend the rest of my life in bits and some days I want to hide away and not see anyone, but I know he’d have hated to see me wallowing in self-pity. So, I owe it to him to keep going and try to keep smiling, for his sake.”
