Apr 13, 2016 5 min read

1 / 4

Ryan Leeper’s mother, Lauren Leeper, had a normal pregnancy. It wasn’t until Ryan was born that he was diagnosed with Moebius syndrome.

Katie Roupe/Observer-Reporter

2 / 4

Ryan Leeper, 1, son of Lauren and Chris Leeper of South Strabane Township, was born with Moebius syndrome. Although it affects his ability to smile, his parents can tell by a small dimple on his cheek when he’s happy.

Katie Roupe/Observer-Reporter

3 / 4

Lauren Leeper holds her son Ryan.

Katie Roupe/Observer-Reporter

4 / 4

Ryan faces several complications with Moebius syndrome, including not being able to blink. The sixth and seventh cranial nerves are affected, which causes a loss of facial expression.

Katie Roupe/Observer-Reporter

[expand]

close

Every day, Chris and Lauren Leeper of South Strabane Township delight in watching their 1-year-old son, Ryan, reach typical childhood milestones.

But there are some things that Ryan isn’t able to do.

Ryan has Moebius syndrome, a rare neurological disorder that leaves him unable to smile, frown, blink or move his eyes from side to side. It is estimated that there are, on average, two to 20 cases of Moebius syndrome per million births.

“We know when he smiles, though,” said Lauren. “A couple of months in, I started to notice the bottom left corner near his cheek dimples in when he’s smiling. He has a tiny, tiny dimple; not everyone can see it.”

Ryan has other health issues. The fingers on his left hand are webbed, his left arm is smaller than the right, he has trouble sucking, which makes eating difficult, and he has an underdeveloped chest muscle.

Moebius symptoms also can cause myriad other problems: clubbed feet, missing fingers and toes, difficulty breathing and swallowing, visual impairments and crossed eyes, sleep disorders and dental problems.

Throughout Lauren’s pregnancy, doctors did not detect any abnormalities.

But when Ryan was born at Washington Health System’s Washington Hospital on April 13, 2015, weighing 5 pounds, 6 ounces, Dr. Kathryn Simons and Dr.Theodore Rogers immediately knew something was wrong.

The doctors initially thought Ryan had a stroke because one side of his face drooped, Lauren said. They also noticed his hand abnormality.

Ryan was taken by ambulance to Children’s Hospital in Pittsburgh, where he was diagnosed with Moebius, a disorder that the Leepers had never heard of. Ryan’s sixth and seventh cranial nerves did not develop.

Facial movements that most of us do unconsciously and take for granted – squint, wrinkle our noses, move our eyebrows – are impossible for Ryan to do, said Lauren, a chemist at Mylan Corp.

The Leepers have made it their mission to educate others about Ryan’s condition.

“We’re his voice, and this is important,” said Chris.

Chris and Lauren worry about how people will treat Ryan because of his physical differences.

“Not being able to smile is huge, because people take so many cues, socially, off of facial expression,” Lauren said. “In every aspect, he’s a normal kid. We want people to know that he has every feeling that you have. Just because his face isn’t showing it doesn’t mean he doesn’t feel it, and it doesn’t mean you should talk to him any differently or not expect him to feel those things. One of the biggest things we worry about is that kids or teachers will think he’s mad or angry at them, or dumb, or bored in class.

“Cognitively, he’s fine. He’s just as intelligent as any other person. I want children to ask, I want parents to ask, ‘Hey, what happened? Why doesn’t his face move?’ It’s not offensive to me. I want them to know, because once they know, I feel they will not treat him differently.”

The Leepers have established a strong support network that includes their family, friends, doctors, therapists and other families whose loved ones have Moebius. Lauren communicates often with other Moebius moms around the world via Facebook, and they’ve been “an incredible source of information,” she said.

Ryan undergoes physical and occupational therapy at Your Child’s Place and Pathways of Southwestern Pennsylvania, and works with an eye therapist and a speech therapist.

Because Ryan can’t blink, Chris and Lauren put ointment in his eyes every day to keep them lubricated.

Ryan is scheduled to undergo his first hand surgery to separate his fingers in May.

Ryan’s parents plan to travel to the National Moebius Conference July 15-17 in Los Angeles, where they are scheduled to meet with pediatric plastic surgeon and craniofacial and reconstructive specialist Dr. Andre Panossian to discuss surgical options that might give Ryan facial movement.

Panossian has performed facial reanimation surgery, or “smile surgery,” on hundreds of patients.

“Our thought process is, his fingers are webbed together; if we can separate them, we’re going to separate them because it’s an advantage for him,” Lauren said. “So if there’s something that can help him smile, we’ll do it. There are so many things a smile can affect for him. If he’s a candidate for it, we think we’d like to have it done.”

The Leepers’ favorite time of the day is the family time they spend with Ryan after work – playing with toys, cuddling and reading books.

Chris wants his son to know that he can accomplish anything, and his parents plan to help him and encourage him to push through obstacles.

“The challenge for me is to do the best I can for him. I just want him, as he grows, to know that I’m always going to be there for him,” said Chris, a warehouse manager at Smucker’s.

“I want him to know there’s nothing he can’t do. It’s up to him. If he wants to do it, he can. There’s no, ‘I can’t because my hand is different.’ You can try anything. If you want to do it, then go for it. I like seeing him hit those milestones. I forget he has (Moebius) half the time. I know it, but when I play with him and hold him, he’s a normal baby to me.”