February 2025 Newsletter - Flipbook - Page 8
Total Raised
£8,218.26
of
£20,000
At such a young age, the
full nature of how Ataxia
will affect little Hugo’s
life and development is
not yet known, however,
regular physio, speech
and occupational
therapies will give him a
great foundation for his
future. Read on to 昀椀nd out
about how his parents
plan to tackle their
fundraising journey, and
what your donation really
means to them and the
future of their precious
boy.
Three-year-old Hugo is not your ordinary toddler.
His cheeky grin and mischievous personality always
brightens up his parents Becky and Charlie’s day. Add
to that his 昀椀ercely independent streak and it’s clear
that Hugo is a little boy with a big personality, who is
ready to take on the world in his own way.
Following a trouble-free pregnancy and labour,
there wasn’t any indication that all was not right,
until Hugo was about four months old when both his
grandmothers picked up that he wasn’t holding his
head up independently, nor 昀椀xing or following with his
vision. A local referral led to an MRI scan, plus many
tests and scans. Everything came back clear but it
soon became clear that Hugo still wasn’t developing as
a typical baby would.
The family was referred to a neurologist at Great
Ormond Street and were told that Hugo’s cerebellum
8
Hugo
DugginsJones
Hugo
was smaller than it should be. Further testing led to a
diagnosis of a rare genetic disease, Ataxia, resulting in
problems with his balance, co-ordination, speech and
swallowing. As Hugo is still so young the exact nature
of how the condition will affect him is not yet known,
so for now the family are concentrating on therapies
including physio, speech and occupational therapy
for Hugo to learn skills to be more independent when
carrying out daily activities such as eating and drinking.
Mum Becky explained “Hugo faces challenges from the
moment he wakes up each day to when he goes to bed.
He needs help with getting up and out of bed, getting
dressed, toileting, he can’t communicate his needs, he
has to be in a positional chair when eating and drinking
and needs 1:1 supervision to pace him and help him
naturally feed. You name it, he needs the help.” Becky
went on to say, “We’re building on independence but in
some ways he’s very much like a one-year old in terms
