Philadelphia-area family raises awarness about rare condition that prevents son from smiling

A Bucks County family is trying to raise awareness about a rare syndrome that has paralyzed their son's face.

Chalfont, Bucks County, is lit up with purple lights for a brave little boy and the condition he has that impacts nerves in his face.

Four-year-old Jackson Roberts isn't able to smile on his own because of a condition called Moebius syndrome.

His parents Trish and Chris Roberts say when Jackson was born, even the doctors were stumped.

"It's a neurological disorder. It's the paralysis of the face," Trish Roberts said. "People with Moebius syndrome have difficulty blinking, sucking, swallowing, breathing, eating, and even speaking.

"They weren't sure if he was ever going to walk or talk or anything like that," Chris Roberts said.

"We didn't even know if we were ever bringing him home. And here we are, almost five years into Jackson's journey, and we believe and we've learned that miracles do happen and to keep the faith and don't let a diagnosis define who you are," Trish Roberts said.

Jackson Roberts spent years in physical and occupational therapy and is happy to play with his big sister and sing and dance to his favorite song.

"Specialists around the world tell us that he is a medical mystery," Trish Roberts said.

Doctors don't know what causes the syndrome that has no treatment. And because it's so rare – 1 in 4 million – there's very little research. That's what the Roberts are hoping to change by raising awareness.

Along with the t-shirts, the Roberts family asked their community to light up Bucks County purple around Jan. 24, Moebius Syndrome Awareness Day.

"It's been unreal. It's so overwhelming, it's so humbling," Trish Roberts said.

For Jackson Roberts, even without a smile, there's joy.