Taunton and South Somerset Living Dec 2021 - Jan 2022

Meet the real life elasti-boy
with a rare condition that
leaves him extremely bendy -
whose mum describes him as a
'little superhero' for dealing
with the pain it causes...
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“With all the stuff he goes through daily, he’s a
little superhero, I’m so proud to be his mum.”
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Wilson was 10 years old when they
first approached bibic for support.
They deliver therapeutic programmes
to children and young adults with
developmental and neurological
difficulties. His mum, Julie-Anne
suspected that Wilson had Autism
Spectrum Disorder and Ehlers-Danlos
Syndrome, which affects the body’s
connective tissue. At four years old
Wilson was diagnosed with hypermobility
- the ability to move joints beyond the
normal range of movement - which
causes him great pain.
Julie-Anne said: “I didn’t know what to
think, I didn’t even know what it was.
I noticed his legs bent backwards and
weren’t straight. He’d ask ‘Why am I so
bendy?’ - We now say it’s his special
superpower however some days it’s that
bad, he can’t walk up the stairs.”
Wilson said: “My bones feel horrible, and
I need a wheelchair sometimes.”
His conditions stop him doing things
most other children do, such as playing
football which Wilson said he ‘would
really love to do.’ But “I’m ill all the time.
It’s not fair.”
Julie-Anne said: “We’ve approached
medical professionals but had no luck.
During lockdown we also couldn’t see
anyone, I spoke to six different doctors
in a year-and-a-half and was tired of
constantly repeating myself. It took so
long to get any help, that’s why we turned
to bibic, after being recommended we
reached out to them.”
Wilson’s therapist, Jess, completed a
‘very emotional’ wellbeing assessment
with him. Wilson was happy to take part,
however his demeanour changed from
this happy boy to very reserved. When
answering when he ‘felt like crying’,
Wilson said ‘right now’ and broke down
in tears because of the way he felt about
himself. Wilson gets a lot of anxiety. He
struggled socialising and couldn’t deal
with or control his emotions, leading to
meltdowns.
Wilson said: “being like this makes life
hard in every way. My senses are on
overdrive, it’s horrible and depressing.”
Julie-Anne has managed alone for four
years without any help or support until
now, due to Wilson’s separation anxiety,
she’s not had any time to herself, and
said ‘I wouldn’t want to, but every parent
needs a break.’
“Getting the support from bibic, I felt
relief, like a weight was lifted off my
shoulders.”
bibic provided a tailored therapeutic
programme to help manage Wilson’s
behaviour, emotions, and difficulties.
Julie-Anne added: “With bibic’s support,
I felt like I finally had everything I needed
to get the help that Wilson had been
waiting so long for. bibic has opened up a
lot of doors for Wilson, it was a relief that
someone believed us. Because of bibic,
people are now finally listening to us.”
Doctors have now referred Wilson to
other specialists after reading bibic’s
report, Wilson’s now working with an
occupational therapist and improving his
speech and language.
Wilson now has access to respite care to
help him socialise more and do activities.
Julie-Anne said: “The report helped
no end, and it helped to get Wilson an
Educational Health Care Plan, which we
had been trying to get for four years, as
well as other support which we had been
fighting so long for.
Through bibic’s support, Wilson now has
more awareness and notices the build up
of his emotions, he is able to manage and
understand his behaviour, express how he
is feeling, and accepts help from others.
He now identifies when a meltdown is
coming and will say ‘help me’.”
“I now understand Wilson’s feelings more
and how to cope and deal with his needs
too. bibic’s made us look to the future
with more hope which is so much brighter
now. I’m proud of the boy he’s growing
up to be. He’s loving and funny - after
all he’s been through, he still comes out
smiling.”
Wilson explained: “Having problems is
hard. I need a lot of help and care, but it
makes me unique so that’s cool. I wants
to go back to school to make lots of
friends.” And when he grows up he wants
to be an emergency services call handler.
Julie-Anne said: “I think this is because
he wants to help people like they have
helped him. We were stuck with no help
for so long and would still be stuck if we
hadn’t received bibic’s support, it makes
a massive difference to people’s lives,
they have helped us get the support and
help Wilson needs for his future.”
bibic receive no government funding, to
help others like Wilson, please donate
now via bibic’s website:
www.bibic.org.uk
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