ADEL Y FATTAH: So can you raise your eyebrows
for me? Ok, that’s good. Ok, now give me that smile as best you can. That’s good. That’s good.
COMM: Isaac Hughes is unable to smile, no matter how hard he tries. The 9-year-old from
Mold in Wales is one of just 200 people in the UK with Moebius Syndrome, a rare neurological
disorder affecting the cranial nerves that causes facial paralysis.
CERI HUGHES: To us it’s always been clear
when Isaac’s been happy or smiling. And people make assumptions based on the fact
that, you know, obviously if you look like that then you must have cognitive issues,
and that’s not the case, and Isaac is a bright little boy.
COMM: As a baby, Isaac struggled with feeding
and was diagnosed with Moebius Syndrome at 6 months old. As he got older, he was unable
to develop speech and sign language was a challenge due to a lack of muscle tone and
small hands - common symptoms of the syndrome, but that didn’t stop Isaac making himself understood.
CERI HUGHES: Even though he couldn’t speak,
he found ways of telling his stories, he found ways of communicating, that was so innovative.
I mean, you know, if someone put a mask on my face and then tapped it up as well, I wouldn’t
be able to tell you a story, I wouldn’t be able to communicate, but he could do that
and he was really good at doing that, wasn’t he?
PHILLIP HUGHES: Yeah, really good lateral thinking for different ways of talking about
things. CERI HUGHES: Very, very clever at the way
that he communicated a story and that was fantastic.
COMM: It wasn’t until he was 7 years old
that Isaac said his first words.
CERI HUGHES: If you’d have asked me two
years ago if Isaac would ever talk I would have said probably not. And it’s only through
really, really, really focused hard work but he’s got to a point now where he can talk.
COMM: Now happily settled at a mainstream
school, Isaac’s speech is progressing well.
THEO HUGHES: I can usually make out what he
says. And then I help him talk like if he says it wrong, I help him pronounce it properly.
And then I help play with him and stuff, and help translate it if somebody didn’t understand him.
THEO HUGHES: What do you want to do when you are older?
ISAAC HUGHES: Footballer.
THEO HUGHES: Why? ISAAC HUGHES: Because I love football.
THEO HUGHES: Whom do you want to play for then?
ISAAC HUGHES: Leicester! THEO HUGHES: Well, are you good enough?
ISAAC HUGHES: Yes!
COMM: Smile surgery is one of the options
opened to Isaac. He’s come for consultation with surgeon Adel Y Fattah, who’s setting
up the world’s first centre for clinical excellence for Moebius at Alder Hay hospital.
ADEL Y FATTAH: On the one hand, I can definitely
see why parents would want to make the decision and have surgery early. It’s for those who
may have specific problems such as bullying at school, wanting to get a job, when they
are out in the public. On the other hand, there are other parents who think, “Well,
I love my child the way they are and if they want to do it, I will let them make that decision
when they are older.”
COMM: The surgery is usually performed either
by connecting the mouth to working muscles in the temple or by implanting a small piece
of another muscle, usually taken from the thigh.
CERI HUGHES: It’s a huge operation, huge
operation. So we are not sure whether we’ll go down that route. It’s not necessarily
a natural smile because it’s more of a mechanical smile. Being a parent is hard, but being a
parent to a child with a rare condition where there isn’t the general informational knowledge
out there is that much harder.
COMM: Keen not to rush into surgery yet, Ceri
has set up a charity to help parents in a similar situation.
CERI HUGHES: In May last year, I set up ‘Same But Different’,
which is an organisation that uses the arts to create awareness of
people behind disability.
CERI HUGHES: We concentrate on rare diseases
and what we use is photography and try and capture the essence of the person.
COMM: Although realistic about the struggles
that Isaac will continue to face as he gets older, Ceri and Phil hope he will continue
to live a happy life.
PHILLIP HUGHES: Yeah, I just want Isaac to
lead a normal life really. Just do everything the same as everyone else really. Just be
as normal as possible.
CERI HUGHES: He is gonna have difficulties,
but ultimately he is Isaac and I want him to proud of that fact, and proud of what he’s been
through and what he’s achieved so far, and what he’ll carry on to achieve. I just
want him to be happy in his own skin and that’s the most important thing.