Wednesday, February 5, 2014

MOEBIUS SYNDROME IN THE NEWS: AN UPDATE

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:

*************************

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.

***********************************

No comments:

Post a Comment