Different on the outside, same on the inside
In most ways, 5-year-old Mary Cate Lynch, this year’s Aon Step Up for Kids patient champion, is like most kids her age. Her mom, Kerry, says her daughter loves going to pre-school, playing with her many friends, swimming and playing big sister to her younger siblings, 3-year-old Maggie, and 1-year-old Brydie.
“She just radiates happiness,” says Kerry. “She’s super funny, and has a smile that lights up the room.”
While her friends and classmates treat her the same as any other kid, strangers often stare at her. That’s because Mary Cate looks a little different, as a result of a rare genetic disorder called Apert Syndrome.
With this disorder, the seams between the skull bones close prematurely, affecting the shape of the head and face and preventing the skull from growing normally. Without surgery, the child’s brain can't grow in its natural shape. Children with Apert syndrome also have fused fingers and toes.
“Mary Cate knows she looks different from other kids, but it hasn’t affected her socially or emotionally,” says Kerry. “In fact, when Mary Cate notices someone staring at her, she’ll often smile at them and say ‘hi,’ because she doesn’t want them to be afraid of her. My husband, Chris, and I tell her that looking different just makes her extra special.”
Mary Cate was diagnosed shortly after birth by a genetics specialist at Lurie Children’s. She has undergone surgery at a Dallas children’s hospital to reconstruct her cranial vault to allow room for her brain to grow, as well as surgeries to separate her fingers and toes. At Lurie Children’s, Mary Cate’s care team has included specialists in orthopaedics, neurosurgery, plastic surgery, otolaryngology, ophthalmology and sleep medicine.
During Mary Cate’s inpatient and outpatient stays at Lurie Children’s, Kerry says she greatly benefited from the hospital’s Family Services programs, including Child Life.
“Hospitals can be scary places for kids,” says Kerry. “To have Child Life specialists available in the reading room, or visiting a child before surgery with a toy or a book to take their mind off their procedure is huge. It also relieves some of the stress on parents to see their child smile and laugh and just be a kid.”
Mary Cate will undergo a number of surgeries as she gets older, including another cranial vault reconstruction in about a year. Despite her challenges, Mary Cate has no developmental delays and is doing well in school.
Kerry is very active in raising awareness of craniofacial disorders like Apert Syndrome, and she and Mary Cate have visited and made presentations at more than 100 Chicago area schools.
“It’s important to teach kids about differences,” says Kerry. “When they meet Mary Cate, they see that although she looks different on the outside, she’s just like them on the inside.”