You may have seen this already. But just in case you have not--read up on the story of young Moebius hero Isaac Hughes:
*********************************
Joker Isaac Hughes loves to tease and make fun of his pals – even though he was born with a condition that means he can’t smile.
The
eight-year-old was diagnosed with rare Moebius Syndrome after leaving
doctors baffled for the first months of his life. It affects just 200
people in the UK.
“Isaac couldn’t feed properly and there were a
few bits and bobs that indicated something was not right,” mum-of-two
Ceridwen, from Mold, said.
Doctors initially thought Isaac – which means ‘he will laugh’ in Hebrew – might just be unusual.
“They did genetic testing but that only picks up certain conditions,” photographer Ceridwen said.
“Moebius is incredibly rare so there is no genetic test for it at the moment.
“Because it is so rare most doctors have not seen it before.
“What happens is that they have eye problems, because they cannot move their eyes left or right.
“Isaac also had a really severe squint.”
At six months Ceridwen and Isaac’s dad, Philip, found out what was wrong.
“Like any parents we wanted to know what to do for the best.
“We
did research into it and we telephoned around and spoke to different
consultants to see if they had seen anyone with this condition.
“Luckily I spoke to one of the consultants at Alder Hey, in Liverpool, who said he was happy to speak to us.”
Isaac had low muscle tone when he was born.
“He could not crawl until he was one, one-and-a-half, and he did not walk until he was two-and-a-half, three,” Ceridwen said.
“Then he used a walking aid. He was walking independently by about four.”
The youngster also has verbal dyspraxia.
“Because of that he could not speak well,” Ceridwen said.
“He could say very little before he was about six-and-a-half. He can
speak much better now but not necessarily always very clearly.
“But he is clever at being able to communicate.”
He likes to make fun.
“He teases people and makes jokes,” Ceridwen said.
“I don’t know how he does it. Because if you have a face mask on how on how do you communicate?
“He has got a really good sense of humour. He likes the same things most boys do.
“Even
though he could not talk he could tell a story. He is just really good
at using the tools that he has. He might mime or use sign. He could
probably draw a picture. He is incredible tenacious.”
Sometimes people feign understanding what Isaac has said.
“One
of the most important things with Moebius, or anything, is that is that
you do not pretend that you know what someone means when you don’t have
a clue,” his mum said.
“Give him a chance to make it clear. He is an intelligent boy and will know if you do not understand.”
Ceridwen was worried people could not get past Isaac’s problems to see how bright he is.
“People make judgements because he looks different and could not speak,” she said.
“People perhaps make an assumption that he perhaps has a learning disability, which he doesn’t.
“It is difficult when you think people are judging people on the way you look.”
So the 46-year-old set up not-for-profit organisation Same But Different to encourage people to see beyond looks.
“I set up Same But Different in May this year after having spoken to a few families with rare conditions,” she said.
Ceridwen embarked on a project to take photographs of youngsters with disabilities.
“There are a lot of preconceived ideas and people do not necessarily want to ask, ‘What is wrong with your child?’ she said.
“We wanted to break down barriers and give people a way of finding out about conditions.”
Ceridwen took images of children including Isabel Gardner, who has encephalitis, and Matthew Hogg, who has Crouzon Syndrome.
Encephalitis is an inflammation of the brain while Crouzon Syndrome
causes a child’s skull and facial bones to fuse early in development.
“They show the real person and hopefully the beauty within,” Ceridwen said.
“We are using those images to hold exhibitions and put them in different places like hairdressers and restaurants and cafes.
“There is a back story with each image, a small amount of information to find out about the person and not just the condition.”
Isaac’s condition is not terminal but Moebius Syndrome can lead to other complications.
“When
you are first given a diagnosis about something all of your ideas and
thoughts about how life is going to pan out change,” Ceridwen said.
“In a way you almost mourn the person you thought your child was going to be.
“But
as time goes by you realise that while life is not as you expected it
to be it brings you a lot of joy for the small things.”
*To find out more about Same But Different visit www.samebutdifferentcic.org.uk or email Ceridwen directly at ceri@samebutdifferentcic.org.uk
**************************
No comments:
Post a Comment