MOEBIUS SYNDROME IN THE NEWS

This one comes from one our friends from across the pond:  Becky Deas, who has Moebius but is refusing smile surgery because she wants to set an example to her children.  Moebius is who she is.  And it's okay!  And to that I say:  good for you, Becky Deas!  Here, read on:

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A mother who cannot smile due to a rare condition has refused corrective surgery - because she wants her children to appreciate different faces. 

Becky Deas, 33, has Moebius syndrome, a rare neurological condition which paralyses facial muscles, meaning she has never been able to smile at her children.

It has also left her unable to blink or look left and right.

When asked by her seven-year-old son why she had never smiled at him, she explained that her face doesn’t work like his.

Now, she has turned down the chance of surgery to enable her to smile because she wants to show her children how important it is to accept differences.

Instead, she has developed other ways to show them how happy they make her.

Ms Deas, from Manchester, said: ‘This is me, I am who I am and I want my children to accept differences.

‘I might not be able to smile on the outside but I am always smiling on the inside. I make sure my children know how happy they make me every day. I don’t need a smile on my face to do that.

'A real smile comes from the heart.’

She added: ‘A lot of people stare at me. I’m pretty sure they must think I’m miserable all the time but that could not be further from the truth.

‘Even I don’t recognise the face in the mirror because it doesn’t reflect how I feel inside at all.’

WHAT IS MOEBIUS SYNDROME?

Moebius syndrome is a rare neurological condition that affects the muscles that control facial expressions and eye movement.
The symptoms are present from birth.
Patients are unable to smile, frown or raise their eyebrows.
They often also have a small chin and mouth and a short tongue.
Dental abnormalities are also common in people with the syndrome.
The condition also affects the muscles that control the eyes so patients have to move their heads to look from side to side.
In some cases, patients are unable to blink or close their eyes which can cause eye dryness or irritation.
Other features of the syndrome include bone abnormalities in the hands and feet, week muscles, hearing loss and delayed development.
Moebius syndrome is thought to affect between one in 50,000 and one in 500,000 people.
The cause of the syndrome is unknown.
Source: U.S. National Library of Medicine

Ms Deas was diagnosed with the condition when she was six months old after struggling to suck from a bottle.

Her parents were warned then she would never be able to smile. But she didn’t become aware of her condition until she was ten.

She said: ‘My parents took me to a conference about it and explained I was different. I hadn’t really notice myself at that point.’

But all that changed at high school when Ms Deas was bullied.

She said: ‘That was the first time I ever wished I could smile.

‘The condition also means I can’t control my mouth so it hangs open and I was called awful names - like fish face.’

She was relieved when she fell pregnant in 2007 with her son Logan and doctors confirmed it was unlikely he would have the condition.

But it was at moments like his birth that Ms Deas wished she could smile to show her joy.

Instead she developed other ways, like using the tone of her voice, to express happiness to him and daughter Lexi, nine months.

Ms Deas says she did consider surgery to remove a tendon from her shoulder, which could be used to help create a smile, but ruled it out for the sake of her little ones.

She said: ‘As lovely as it would be to be able to smile at them, I didn’t want my children to think it is necessary to have surgery to look the same as others.

‘We are all different in one way or another and that is nothing to be ashamed of.

‘I’m delighted for people who do have the surgery, but it just wasn’t for me.’

Ms Deas held an awareness day earlier this year to help people understand she isn’t glum and to raise awareness of her condition.

She said: ‘I didn’t want to get into the situation of approaching people who are staring at me because that isn’t me, but I wanted to get the message out there.

‘I may not be smiling but I am certainly one very happy mummy.’

For more information, visit www.moebiusresearchtrust.org

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