Woman draws attention to rare syndrome
Published Wednesday, February 23, 2011 5:16PM MST
A young woman is trying to raise awareness about a rare syndrome that affects her ability to move her facial muscles.
Kelsey Ferrill has Moebius Syndrome which is a neurological disorder that affects cranial nerves. She is unable to move her face and finds it difficult to communicate using non-verbal facial movements.
"Usually to contact people I don't know, I usually email or stuff like that,' said Kelsey.
Moebius Syndrome is present at birth and those who have it are unable to smile, frown, suck, grimace, blink, or move their eyes laterally.
Each person with Moebius is affected in a slightly different way. In Kelsey's case, her face is paralyzed and so is half her tongue.
Other complications may include hand/feet anomalies, respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders, and weak upper body strength.
Kelsey says because of the way she looks people judge her immediately and even her friend Samantha admits she assumed Kelsey was mentally challenged.
"I feel bad, really bad because I spent 10 years down the street from her, knowing that she lived here, and never saying hi," said Samantha Adair.
"Just because you might look different doesn't mean you're any different inside than anyone else," said Kelsey.
There is not a lot of treatment available, although surgeons have transplanted muscles from Kelsey's thigh to her face so she can create a smile and she also had laser surgery on her eyes.
Approximately 30% of children with Moebius syndrome are on the autism spectrum.
For more information visit the Moebius Syndrome Foundation website.