A Huntingdonshire mother is continuing to find strength despite the heartbreak of losing her "unique, tenacious and intelligent" son.
Claire Reece’s son Hugo died in November 2024, aged 15, after living with CHARGE Syndrome, a rare genetic disorder caused by gene mutations.
The family, from St Neots, received long-term support from East Anglia’s Children’s Hospices (EACH) at its Milton facility, starting when Hugo was just two-years-old.
Mrs Reece said: "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."
She described Hugo as a "fantastic young lad who loved life and being around people."
She said: "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."
Hugo, who was deaf, non-verbal and communicated using sign language, was born with CHARGE Syndrome, a condition affecting around one in 10,000 babies worldwide.
He underwent heart surgery at Great Ormond Street Hospital and faced many health challenges in his early years, but his family said he never let his condition define him.
After his sudden death at Hinchingbrooke Hospital, Hugo was moved to the Milton hospice, where the family spent three days together, supported by EACH.
Mrs Reece said: "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.'"
The time at the hospice allowed the family to say their goodbyes in a familiar and comforting setting.
She said: "He was taken into the room where he normally stayed at the hospice, and it was so comforting.
"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 support the family, offering ongoing counselling and sibling support.
Mrs Reece said: "I wouldn’t manage without them.
"Having someone I can talk to and be honest with, who understands my situation, is invaluable.
"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."
She said that, despite the difficulty of the past year and a half, she tries to keep going for Hugo.
She said: "I miss Hugo, and I miss what we had together.
"I find it hard not knowing what the next chapter of his life would have looked like."
She said she draws strength from her partner Steve and her other children – sisters Martha, 15, and Hilary, nine, and brothers Eric, 12, and Etienne, eight.
She said: "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."
Mrs Reece said her life is now "very different" without her son, as so much centred on his care.
She said: "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."
Her resilience, she said, is partly motivated by knowing what Hugo would have wanted.
She said: "He couldn’t bear to see me upset.
"It would make him sad.
"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."
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