MORE MOEBIUS HEROES

Here are more stories that came out of Moebius Syndrome Awareness Day, stories of ordinary families and persons dealing with Moebius Syndrome; and being everyday heroes in the process.  I want to make sure that as many people as possible have a chance to see these.  Below for example is the story of Warren Armstrong, from the UK.  He is a year old, and he has Moebius.  He's thriving.  Read more about him:

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A one-year-old has been diagnosed with a rare disorder that makes him look permanently unhappy.
Warren Armstrong suffers from Moebius syndrome which makes it difficult for him to smile or pull facial expressions.
Warren’s mother, Jannine Atkinson, 26, from Salford, said: ‘The first year has been really difficult. It was really hard to recognise when he wanted something.
He finds it really hard to smile - it takes a lot to get one of out of him. He constantly looks grumpy because his chin is back, but we have learnt to be able to recognise when he’s happy or when he’s upset. You can see it in his eyes, a sort of glimmer. He’s really loud and talkative as well.’
Moebius syndrome is a rare neurological condition that is present from birth.

It affects the cranial nerves meaning patients are unable to move their faces.
Sometimes patients also have skeletal abnormalities affecting their hands and feet.

They often also have breathing problems, visual impairments, sleep disorders, weak upper body strength, and dental problems.

WHAT IS MOEBIUS SYNDROME?

Moebius syndrome is a rare neurological condition that is present from birth.
It affects the cranial nerves meaning patients are unable to move their faces.
Sometimes patients also have skeletal abnormalities affecting their hands and feet.
They often also have breathing problems, visual impairments, sleep disorders, weak upper bodies, and dental problems.
The syndrome is thought to be genetic but usually only occurs once in a family.
Source: Moebius Syndrome Foundation
 

The syndrome is thought to be genetic but usually only occurs once in a family.
Warren was also born with deformed hands and had to be fed through a tube in his first few weeks as he unable to latch onto his bottle.
Ms Atkinson said she knew something was not right, but it was not until Warren was four months old that doctors were able to diagnose the rare syndrome.
It is believed only about 20 children in the UK suffer the same symptoms as Warren, who lives with two of his four siblings, sister Leona, five, and brother Leyton, three.
He also has two sisters Annalise, five, and Ellouise, three, who live with his father, Keith Armstrong, 32.
Ms Atkinson has been told Warren will require an operation on his hands when he is two, and one on his face when he’s four.
She now wants to make more people aware of the condition.
She said: ‘I’m hoping he can go to mainstream school. However, people when they see him with his “sad look” as we call it, they need to understand it’s not his fault - it’s a disorder.
‘Hopefully, more research can be done into it to find out what causes it.’

Warren was diagnosed when he was just four months old - in his first few weeks he had to be fed through a tube as he could not latch onto a bottle

She now wants to make more people aware of the condition.
She said: ‘I’m hoping he can go to mainstream school. However, people when they see him with his “sad look” as we call it, they need to understand it’s not his fault - it’s a disorder.
‘Hopefully, more research can be done into it to find out what causes it.’

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