South Charlotte

5-year-old Emma McRae smiles with her heart

Five-year-old Emma McRae doesn't smile or frown.

She has Moebius syndrome, and is unable to show any facial expressions.

She makes up for that with enthusiasm and charm.

"Because of facial paralysis, many with Moebius syndrome are assumed to be dumb or unfriendly. That couldn't be farther from the truth," said Megan McRae, Emma's mother.

"To not be able to smile back, you have to make up for it in personality, which my daughter definitely has."

McRae says the unofficial slogan of the Moebius Syndrome Foundation is: "We smile with our hearts," and Emma seems to grin all the time.

When Emma was born, in Sylva, N.C., nurses noticed that when she cried, her face didn't grimace - sound came out but her expression didn't change.

She also couldn't nurse or suck on a bottle, so she was transferred to Ashville's Mission Memorial Hospital, where her condition was diagnosed.

"The condition is so rare that many people wait years to be diagnosed because physicians aren't familiar with it," said McRae.

"When we were in the neonatal intensive care unit at Ashville Mission Memorial Hospital, several specialists examined her.

"Once the geneticist examined her, we had a diagnosis within five minutes. He had never seen someone with Moebius syndrome but had read about it and put the pieces together. We were very lucky," said McRae.

Emma has had several surgeries to correct her club feet, worn a patch to help strengthen her eye muscles, and wears hearing aids to compensate for moderate hearing loss.

She's still in speech therapy but recently was released from physical therapy after five years.

Emma started reading at age 4 and is excelling in kindergarten at Clear Creek Elementary School.

Jan. 28 was Moebius Syndrome Awareness Day, and Emma's entire family - her mom; dad, Shaun McRae; and 1-year-old sister, Chloe - wore purple in honor of the day.

Emma and her mom also passed out fliers at school and at speech therapy to spread the word about her condition.

"We want to create awareness about Moebius syndrome," said McRae.

"We also want to let people know that even though Emma may look a little different, she is a vibrant, smart, funny, beautiful 5-year-old."

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