Rare congenital condition not slowing college-bound Moorhead student

FARGO

Emily Paulson's life started with a stint in intensive care, a string of surgeries and a nap on singer Cher's lap.

She's since endured more surgeries, hours of therapy and the occasional pitying stare. But Emily, 18, has refused to shirk from attention. She's performed on a musical theater stage weeks after surgery. She's played the cello for a crowd at Pearl Harbor. She's appeared in a fitness video.

Last year, the Moorhead High School senior returned to Fargo MeritCare's Neonatal Intensive Care Unit, where she spent weeks as a newborn, to volunteer. She's proof a feisty spirit trumps the snags a rare genetic disorder threw at her.

"It hasn't stopped me from doing anything," Emily says.

Emily was born with Treacher Collins syndrome, a congenital disorder one in 10,000 babies has. Infants with the condition have underdeveloped facial bones and difficulties speaking, swallowing and hearing. During her stay at the NICU, doctors inserted tubes in Emily's airway and stomach to help her breathe and eat.

After attending a Children's Craniofacial Association retreat as a toddler, Emily got an invite to appear on a national talk show with Cher. The singer had become active with the association after starring in "Mask," a movie about a boy with facial deformities.

Cher pointed out kids like Emily are just like other youngsters. As if to prove her right, Emily set out on an exploratory trek across the stage and then plopped on Cher's lap.

That was one early sign of Emily's fearlessness. At 18 months, she started pulling the tracheotomy tube out of her neck as a form of protest. That's how her parents figured out she didn't need it anymore.

Before jaw surgery at age 4, Emily mostly communicated through sign language. Post-recovery, she amazed everyone with her sophisticated vocabulary. In grade school, she insisted her mom invent extra homework for her.

Treacher Collins can be a bit of a drag, Emily concedes. In her early teens, she had trouble breathing in her sleep and brought a sleep apnea machine to sleepovers. After surgeries, her dad, Dan, goes on a liquid diet with her.

Emily, who wears a hearing aid, has to focus to follow classroom lectures. Her teachers used to wear mics, but she cracked down on that her freshman year. "I hate having people do things especially for me. I can't stand that," she said.

But the disorder hasn't slowed Emily down; she's her class's salutatorian.

"You want your kids to do the best they can do," says mom Denise. "Emily has always put 100 percent in everything she does."

Emily recalls the tightness in her stomach as she was about to first step on stage before an unfamiliar audience. It was a sixth-grade musical called "Showstoppers."

She's graced the stage many times since. Patrick Kasper, a Fargo choreographer, tapped her to appear in a hip-hop workout video in her signature pink tennis shoes.

"You are always nervous before you go on," she says, "but then you get on stage, and you see all these people watching with so much excitement."

Emily's traveled to Hawaii with the Moorhead High orchestra and to Scotland with the school's production of "High School Musical." The show gave Emily her toughest stage trial: playing an "emo" girl.

"You have to be sad and mad, and that's completely the opposite of how I am," Emily explains.

To coax out the character, Emily conjured the pain of post-surgery recovery. She dyed her blond hair black, went heavy on the black eyeliner and shuffled across the stage in a cloud of teen angst.

"Emily auditions beautifully, and she's a fierce performer," says director Rebecca Meyer-Larson. "We don't notice she looks different from most girls. All we see is beauty and joy and confidence."

Meanwhile, Emily has cultivated a passion for youngsters with medical struggles. She's been baby-sitting a girl with cerebral palsy. She signed up to volunteer in the MeritCare NICU, where nurses still remember her and her unfailingly upbeat parents.

After a surgery in June, her 11th, Emily starts at Concordia College. She plans to go into nursing.

"She has so many great achievements, but we are most proud of who she is," says Denise. "She's always happy and positive."

The Forum of Fargo-Moorhead and the Herald are Forum Communications Co. newspapers.