08/03/2026
All about Hugo 🌈
I’d like to introduce myself. My name is Claire. I have lived in St Neots for 11 years.
I love being part of this town and its community bringing up my children.
I moved to St Neots in 2015 so my son Hugo could go to Samuel Pepys school.
Lots of local people knew Hugo. He was quite simply an exceptionally wonderful little boy who I’m proud to call my son.
Hugo was born with CHARGE Syndrome, a rare genetic condition that affects a multitude of system defects which include heart condition, deaf, blind, kidney defects, swallow, speech and physical impairment.
His early life was very difficult and he faced many surgeries, extensive hospital admissions and fought very hard to survive.
But Hugo was born with a determination like no other, and unlikely to be seen again. He had an ability to be so very poorly and then simply bounce back as if nothing had happened. He was unique and extraordinary and quite simply brave beyond anything I’d ever known or seen in my life.
When Hugo was 5 he started at Samuel Pepys School and started a journey that was hard to begin with, but slowly became joyous, and for Hugo a daily routine that he adored. Hugo loved school and the familiarly, routine and structure that his condition required. He began to thrive.
Hugo was deaf and non verbal and during the lockdown era he became more independent and began a journey towards BSL which helped him Communicate and so he became fluent in sign language and his world opened up.
Hugo often had bouts of being very poorly but always wanted to know when he would be able to return to school.
As he grew he became independent, happy and a very familiar face around St Neots.
He loved people and made friends everywhere he went.
Hugo was always happy and loved life.
He loved the local Pocket parkrun, helping me with volunteering - which meant him sitting in a chair shouting and clapping and occasionally giving a high five or hug, and he loved Riverside St Neots Junior Parkrun, which often saw him pushing himself to complete both laps even if he should have stopped at one!
Hugo was a member of the Buckden owls football team and loved his Sunday sessions where he played with a tenacity that often gave the impression he was one day going to be the newest Team GB representative.
There wasn’t much Hugo couldn’t do or try and even if you said no, he’d have a go anyway.
Hugo loved life and was quite simply the most courageous young lad I ever met.
In November 2024 Hugo died very suddenly and unexpectedly. He has left a void in our world that is unimaginable and a huge loss to our community.
But I refuse to let Hugo’s name be forgotten.
So I have decided to create a legacy in his name.
Which is where Hugo’s Rainbow Ball has begun.
An evening of food, fun, music and laughter is everything that Hugo loved.
We are fundraising for Samuel Pepys school, SENSE Charity and All Inclusive Football Coaching.
Every penny raised will help these amazing charities and support what they did for Hugo and what they continue to do for children just like him.
