MOEBIUS SYNDROME IN THE NEWS
Another Moebius heroine gets her day in the sun.  Her name is Breanna Hinchcliffe.  This is a great article; I reproduce it here in full:
"HEIDI and Darren Hinchcliffe had never really seen a newborn before. Never seen one scrunch their face up and wail at the world.
So it didn't seem strange when their baby, Breanna, cried for the first time and her face didn't move.
They had known since the 13-week ultrasound that their baby would be a little different to everyone else's.
But there was something they could never have known then - that it would take almost 11 years before they would see Breanna smile.
When Breanna was born, the hospital gave up on the wristband. They said there was no chance they'd lose her in the nursery.
For one, her hair was "bright as a carrot".
And no other babies had been born with club feet and missing digits that week.
At their first scan they learnt their baby had something they'd never heard of, called bilateral talipes.
Bewildered, the first-time parents drove straight to Kmart to find baby books on what to "expect when you are expecting".
The young parents nervously thumbed the pages.
"We found out it was club feet and thought, that's all right, we can deal with that," Heidi says.
At 20 weeks, doctors could count only two fingers on their baby's left hand.
The club feet and missing fingers were both indicators of a chromosome disorder.
"The doctors said if your baby has this problem, it is unlikely that it will survive the pregnancy and if it does, it will die soon after birth."
It was a relief when she was born.
She was there.
She was theirs.
"We were ready to face anything that came our way."
In the days after her birth, doctors noticed Breanna's face appeared to be paralysed, she wasn't blinking and she had difficulty attaching to her mother's breast.
This, combined with her club feet and missing digits, were classic signs of a rare neurological disorder, which affects the sixth and seventh cranial nerves.
That was how their firstborn came to be diagnosed with Moebius syndrome.
Doctors told them something they found hard to imagine - their tiny girl would never smile, frown or use her face to express how she felt.
HUMAN communication can be a complex thing, but it can be simple too.
Simple as a little girl giving a big smile when something or someone makes her happy.
Breanna, of course, couldn't do that. She had to find other ways.
A few months after she was born she had developed a big-bellied laugh, one that shook the change table.
As she got older she found other ways - sometimes it was how she held her head, an angry stomp, or she would just come right out and say what was on her mind.
Somehow, something extraordinary happened.
Her inability to express emotions made her more in tune with others.
Breanna, who will be 11 this month, has become intuitive, empathetic and physically affectionate.
Instead of a wave and a smile, she gives a hug or holds hands. At her primary school, she sits beside the main block, away from the ball games, deep in conversation with a friend.
You can tell she's listening, engrossed. She leans in until she's just centimetres away and then she tilts her head to one side.
There's no need for smiles.
In class, as they repeatedly write their names for 60 seconds, Breanna shows she's nervous by touching her face with her hand and her little legs kick beneath the desk in excitement.
WHO has ever heard of a child looking forward to surgery?
Who would have thought Breanna would after a dozen operations on her legs with pins, casts and crutches?
Her baby album has barely a photo without a cast of sorts.
A toddler shot with her bum resting in the kitchen sink, her plastered leg cast over the side of the porcelain bowl.
But Breanna decided she wanted the operation.
She wanted the smile surgery because it would help her communicate.
And her plastic surgeon from the Royal Children's Hospital, Dr Sian Fairbank, says she's never seen a more willing candidate.
It's Breanna's second time under the knife; last March she had smile surgery on the right side of her face.
Her thigh muscle is harvested and attached to a chewing nerve, allowing her mouth to curl upwards into a smile when she clenches her teeth.
She remembered what it felt like to feel a muscle twitch in her cheek for the first time.
"She had no muscles moving for 10 years so it was really noticeable," Heidi recalls.
She would complain it felt tight all the time. Darren used to tell her "scratch your leg, that will fix it".
Breanna had to make sacrifices for the surgery. She gave up chocolate for six weeks to prevent her blood vessels from constricting.
To stop her applying pressure to her face while it healed, Tupperware containers were strapped to the left side of her body.
The smile surgery prompted all sorts of odd questions.
"Will she permanently smile?" people wanted to know.
Says Darren:"I think everyone had the presumption that she'd just be able to go . . .(his face breaks into a creasy grin casting deep chasms in his cheeks)."
But it's the questions that are not asked that can be the hardest when your child has a rare illness.
Sometimes when people took a second glance, or well-meaning mothers shushed their children in the park, Heidi wished they would ask away.
HEIDI and Darren have three children.
Their school photos sit on top of the TV cabinet in the lounge room of their home on a small block 40 minutes from Melbourne.
Outside, the branches of the lemon tree sag under the weight of fruit, the dam is almost full and the youngest Ethan, aka Nugget, has just returned from Auskick.
It's still wet outside and Breanna and her little sister Ebony tease each other about who likes Justin Bieber the most.
Do you like your new smile, Breanna?
"Yup."
How does it make you feel?
"Good."
"We don't think it's that different or special, that's just us and our lives," Heidi says.
"Breanna is perfect and we don't see her as being any different to other kids."
HER first smile came in March, three months after her surgery.
It was not Alisa Camplin-on-the-podium perfect, nor was it wide like Julia Roberts.
But the first subtle signs of her lips curling outwards were cheshire cat-sized for the family.
It was Crazy Hair Day at school, almost two months after the January operation when the muscle from her thigh, implanted in her cheek, began to move.
Breanna had pipecleaners in her hair and was practising in the mirror.
" 'Mum!" she said, 'look at this'. Her eyes lit up she was so excited," Heidi says.
The next success came when Heidi and Darren opened an envelope and saw a school photo of their little girl grinning.
"That was a big moment," Heidi said. "She was very cheeky, she kept it a secret for five weeks and wouldn't tell me if she smiled in the school photos or not."
Breanna, it seems, is already learning the power of a smile.
"She has started using it to her advantage," Heidi says.
"She'd do something wrong and you'd just be like, 'Oh golly darling I can't tell you off for spilling your milk, look, that is just gorgeous'.
"If you were having a bit of a flat day and feeling grumpy about something she'd smile because she knew that would just light up your day."
She is also learning that a smile can take a bit of work.
The more Breanna practises clenching her teeth to send messages down the chewing nerve to the new facial muscle, the bigger the smile will become.
For the moment, her smile will be a deliberate movement. But one day, it could become spontaneous.
Just like a smile should be."

"Life is like a box of chocolates; you never know what you're gonna get."--Forrest Gump.