So do you remember Warren Armstrong--the little boy from the UK who has Moebius Syndrome? We met him last week. Well, now the news stories on him are multiplying. Another news service in the UK has put the spotlight on him, and thus brings us even more details about him and his courageous family. One interesting thing that comes out of this article--it reports that Warren's doctors say they have no idea how Moebius will affect him once he grows up. See, everybody--including, and perhaps especially, meaning medical professionals--needs more information concerning Moebius. Let's keep up the good work! Meanwhile, read on:
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Warren Armstrong is the boy who can't smile. At four-months-old he
was diagnosed with an extremely rare condition called Moebius Syndrome
which causes facial paralysis. It means he struggles to pull any facial
expression.
Warren's mum, Janine Atkinson, said: "It makes him look unfriendly,
people class it as grumpy because he can't smile like we would. His eyes
go inwards because the nerves aren't connected to help move them from
side to side like we can - he constantly looks unhappy when he's not."
The condition's so rare that only 20 youngsters in the UK are thought
to have it. It's characterised by facial paralysis and the inability to
move the eyes from side to side - or even blink. Patients may also
have limb or chest wall abnormalities.
For Warren - its meant he's been born with deformed hands. But it
wasn't until he was four-months-old that doctors finally diagnosed him.
One of the most difficult things for his family has been trying to read
his emotions.
Janine said: "It was hard at first, do we know if he needs a bottle
because obviously he wasn't cooing or anything, but you'd see it in his
eyes so you'd learn you had to look in his eyes to see if he was happy
or sad."
Diana Farragher is a chartered physiotherapist who has spent years
looking into the condition. She's travelled the world seeing patients
with Moebius syndrome and now helps youngsters using a variety of
therapies including electrodes on the face which pick up nerve signals
in the face.
She said: "There are therapies that can be used to make sure the muscles are stretched and they learn to speak and socialise."
Warren's due to have operations on both his hands and his eyes
But doctors have no idea how the condition will affect him in the future
"When Warren's older I feel it could be difficult for him to get a
job because when we go for interviews we smile and its all about your
facial expressions -more than you talk what people are attracted to,"
says his mum. "So the awareness we really want is we're absolutely fine
on the inside its just the outside is a bit different. My hopes are that
he can go to mainstream school and once he's had his surgery help him
along his way, not be singled out cos of Moebius syndrome and hopefully
this awareness I'm trying to get out will make people understand that he
is like everybody else."
For his family - its all about making people more aware of his condition
He may not be able to smile - but for his mum, he's still their happy bubbly little boy.
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