MOEBIUS SYNDROME IN THE NEWS
Because after all...today is Moebius Syndrome Awareness Day!

A young lady named Breanna will undergo smile surgery down under:
"BREANNA Hinchcliffe is a happy little girl, but you wouldn't know it.  The 10-year-old was born with a rare condition that permanently paralyses her face. She cannot smile, frown or blink her eyes.
But today she will undergo special surgery to give her the chance to smile for the first time.
"We've waited 10 years for her first smile, it will just be beautiful," her mother Heidi said yesterday. "I think I'll cry."

Best of luck to the Hinchcliffe family!

And here's another article on our friend Kelsey Ferrill, from Canada:
"As a baby, Kelsey Ferrill didn’t cry.  She had to be force fed with a bottle and doctors believed she was blind because her eyes were unable to follow light.  “You knew something was wrong,” recalls her father Chris. “You just didn’t know what.”  Finally, after a month or two of dedicated research by her pediatrician, Ferrill was diagnosed with Moebius syndrome, a rare neurological disorder that affects a person’s eye movement and ability to produce facial expressions among other things.  Now 20, Ferrill looks back at her struggles to date, which include about 10 corrective surgeries and a general stigma attached to her disorder.  “People think that because you look differently, you’re not all there. I think that’s a real misconception,” Ferrill said.  Chris said research into Moebius syndrome is still in its “infancy,” but the disorder has done little to hinder his daughter’s hopes and dreams.  “You tell her that, yes, you may have physical attributes that are a little bit different but so does everybody,” he said."

Great stuff...

And here's a story on another heroic young lady, also from Canada, named Cassie Curtis:
"By the time she was one, Cassie had undergone five operations. Since she couldn't swallow, she required a feeding tube and tracheostomy. A cleft palate at the back of her mouth was repaired and she had surgery on both hands. Except for a few day passes, she spent 18 months at the General hospital rotating between the neonatal unit, medical pediatric intensive care unit and pediatric unit.  "She kept getting pneumonia, so I finally said to the doctor, 'We're going to lose her. Let me take her home with the ventilator. I know how to use it. I do it every day.' " Robbie said.  After much advocating, she was able to take Cassie home to Bethune, 60 kilometres north of Regina, in July 2000.  She believes Cassie was the second child to be home-ventilated in the Regina Qu'Appelle Health Region. Since then, the region has created a pediatric team to oversee homecare for home-ventilated children.  "They have staff going into homes at night now," Robbie said. "Cassie has a home health aide who takes care of her in our home from 11 p.m. to 7 a.m."  After surgery on her feet, Cassie learned to walk and no longer needs a wheelchair. She continues to be tube fed and is on a ventilator at night and for an hour during the day to expand her lungs.  Despite her health issues, she excels at many activities including Wii games.  "She recently started playing the drums even though she has one very small hand and only two normal digits between both hands," Robbie said. "She plays baseball and participates in most activities at school."

And an excellent column on Moebius by Michael Stalla, of the Tallahassee Democrat, is being distributed around the country:
"Many people with Moebius lead full lives — both personally and professionally. But facial expressions are important in social interaction, and other "normal" people may have difficulty recognizing the emotions of people with Moebius. A person with Moebius Syndrome who can't smile may appear unfriendly or disinterested in conversation.  Because I have this disorder, today means a lot to me. A lot of what you have read above describes me — I have half a smile. I have one toe on my left foot and wear a leg brace to support my bone on that leg. I've had my eyes stabilized so they don't go cross-eyed. I've had a lot of corrective surgeries.  These physical issues may scare people away.  But the purpose of this day is to let people know we are just like you. I don't think of myself as being different. I think of myself as who I am — my normal self.  So what would I ask of other people? Please, look beyond my different-looking smile and see what's on the inside."