Amelia Brusk may only be 5 years old. But with nine reconstructive surgeries under her belt, the Barbie-loving kindergartner could teach the world plenty about overcoming challenges.

Amelia has Apert syndrome, a rare genetic condition affecting roughly 1 in 75,000 births.

In August 2016, Tricia and Joel Brusk didn’t know any of that.

The Grand Rapids couple sent their first child, Jocelyn, then 19 months old, to stay with family one day that month as they headed to Spectrum Health Butterworth Hospital for Amelia’s birth.

After a normal delivery, the doctor set the newborn on Tricia’s chest. Joel leaned over and marveled at her and counted her fingers and toes.

Instead of 10 separate digits, however, Amelia’s fingers were fused.

“Like little, tiny mitten hands,” Tricia recalls. “Her toes were fused, too.”

The NICU team swept in and began a clinical assessment. From that point on, “everything was kind of a blur,” Joel said.

Amelia’s care team also noticed a high arch to her palate.

They soon reached a diagnosis: Apert syndrome.

It’s characterized by distinctive fusing of bones, with fibrous joints causing them to close prematurely.

She also had a cleft palate, which made feeding her highly challenging, as well as fused bones in her skull and spine.

As everything came to light, Tricia and Joel looked to the NICU team for knowledge and guidance.

“We were really scared,” Tricia said. “And there’s such a whirlwind of emotions.”

Amelia spent five days at the Gerber Foundation Neonatal Center at Spectrum Health Helen DeVos Children’s Hospital, her family meeting the small army of specialists who would soon become an integral part of their lives. That included occupational, physical and speech therapists.

It also included John Girotto, MD, a plastic surgeon specializing in craniofacial treatment at Helen DeVos Children’s Hospital.

“When Dr. Girotto came in, he said, ‘Welcome to the family,'” Tricia said. “And that made us feel a little better.

“He told us, ‘We’re going to figure this out together and we’re going to get you through this.’ We really did get the sense that, yes, we may have been overwhelmed. But these experts were going to talk us through everything and we’d be OK.”

That sense of becoming a family is essential, Dr. Girotto said, because Amelia’s syndrome would require many surgeries over many years.

“This isn’t like having your appendix out,” Dr. Girotto said. “We’re going to be friends and family members with these patients a long time, doing lots of work in many slow steps. Well past high school graduation.”

A ‘staircase’ of surgeries

Amelia spent her early months in a marathon of appointments. The Brusks balanced pumping breast milk and complex feeding procedures with constant appointments for scans, X-rays and blood draws.

At 5 months old, Amelia had her first surgery—a frontal orbital advancement. The six-hour procedure required removal of the front part of her skull to reshape it, making room for her growing brain.

She also had an eight-hour surgery, a syndactyly release, to start separating her fingers.

Remarkably, she came home the same day.

That procedure gave Amelia a pinky and a pointer finger on each hand, enabling her to grip things.

Next came surgeries to repair her cleft palate, followed by the insertion of ear tubes and tear-duct stents.

At 17 months, surgeons corrected the back portion of her skull. This procedure included two screws that would protrude from her head. The Brusks would turn the screws 1 millimeter each day at home, gradually enlarging it.

Terrifying? At first. But with every milestone—as Amelia learned to hold her head up and then sit up—her parents’ confidence grew.

“We could see she wasn’t so fragile and we knew she was going to be OK,” Tricia said.

Today, she’s a lively, spunky kindergartner.

“She is thriving,” Tricia said. “Cognitively, she’s fabulous—reading and writing.”

She has three toes on each foot.

“We’ve got special shoes to help her walk and she’s doing gymnastics now, which helps with her balance,” Tricia said.

Amelia receives therapy at school, helping her learn to use her fingers, too.

“They are all separated now, but she does not have the tip of her fingers and no knuckles,” Tricia said.

She’s a typical 5-year-old with a spirit all her own, Joel said.

“She’s very rambunctious, very stubborn and very set in her ways,” he said.

She loves animals, including their dog, cat and bunny. And she’s a huge fan of family camping trips, especially roasting marshmallows.

Her big sister Jocelyn, 7, is her best buddy. Their occasional squabbles are punctuated by pep talks and cheerleading sessions, often led by Amelia.

“We went to Disney recently and it was Amelia holding Jocelyn’s hands, urging her to be brave about going on the rides,” Tricia said.

The Brusks work tirelessly to let Amelia know her syndrome may make her different, but it’s not something to be ashamed of.

They’ve also worked hard to share her story with others. Tricia is active on social media, which is vital for families facing rare disorders to know they’re part of a much larger community.

The road ahead

Early surgeries have helped make room for Amelia’s growing brain. They’ve improved her ability to communicate, too, and maximized her ability to use her hands and feet.

But more procedures lie ahead.

“Eventually, we will reconstruct the constricted mid-face and bring all of her facial features out to appropriate positions,” Dr. Girotto said.

Typically, that’s done between the ages of 7 and 10. Surgeries to further refine Amelia’s fingers are also in the offing.

But once her face finishes growing, the rate of surgeries will slow down, Dr. Girotto said.

None of these procedures could be considered routine—it’s a rare syndrome, after all.

But it’s important for parents facing such diagnoses to understand there is a tremendous body of evidence and experience guiding surgical experts, Dr. Girotto said.

“This isn’t new for our team,” he said. “We’ve got all the resources in place to help, every step of the way.”

As Amelia grows, he said it will increasingly be up to her to choose the type and rate of surgery, selecting the reconstruction she wants.

“We start with the areas where we can make the biggest impact,” he said. “But Amelia is going to be her unique self, and the amount of intervention that she’s going to require will be different from every other kid with Apert syndrome.”