Chris and Kerry Lynch were blindsided by the "5
p.m. news" on Dec. 8, 2011.
Not by a TV anchorman, but by a doctor's diagnosis of
their daughter's odd and curious condition. It came nine long and
torturous hours after she was born by Cesarean section with a
"Your daughter has Apert syndrome," a
geneticist finally told the first-time parents.
Apert syndrome? Their minds raced. Their hearts sank. They
searched the Internet for more answers about their new bundle of
question marks, who they named Mary Catherine.
"Her face looked kind of scrunched up, but I didn't know
the complexities involved at that point," recalls
Chris, a certified public accountant.
Apert syndrome is a craniofacial condition affecting the
head, feet, and hands; a spontaneous genetic mutation that occurs
at conception. It's very rare and occurs in only 1 in 120,000 to
200,000 live births each year in the U.S., according to conflicting
It's so rare that the couple heard different
pronunciations of it by doctors, who appeared baffled by its
characteristics: fusion of the fingers and toes, premature fusion
of cranial sutures, a sunken mid-face, with physical and cognitive
"There were no warning signs at all during the
pregnancy," says Kerry, a registered nurse. "But we
were initially told to expect anywhere from 20 to 60 surgeries over
her lifetime. Plus, countless therapy sessions - physical,
occupational, speech, developmental - to alleviate expected
Chris and Kerry, who are both 32 and married for three
years, quickly learned more about the syndrome, named for the
French physician who first described it in 1906.
A child's skull is made up of several "plates"
that remain loosely connected to one another, gradually
growing together to form an adult skull. But a child's skull with
Apert has a premature fusion of these plates, restricting
brain growth and causing increased pressure in the brain as it
It's called craniosynostosis.
"The middle part of her face will never grow and develop
properly, which will lead to many other severe craniofacial issues
and require numerous intensive surgeries," Kerry says.
Like most parents of children with special needs, Chris
and Kerry quickly have become proficient
about such complex medical jargon. They also found an
internationally-renowned physician who has treated roughly 150
children with Apert, nearly double that of any other doctor or
practice in the world.
"The prognosis for Apert syndrome in part depends upon how the
condition is treated, especially in the first few years of life
when development is so critical," says Dr. Jeffrey Fearon,
Center practice is located in Dallas, Texas.
At 18 months old, Mary Cate has undergone four major
surgeries on her hands, feet and skull. But Fearon believes she may
need 10 more operations by the end of her teenage years, a
relatively low number compared to other Apert children.
Life expectancy predictions for kids with Apert are
limited because no one specifically has followed children with this
condition for that long, Fearon says.
"I would say that (life expectancy) has been shorter than
it should be, but with the right care, life expectancy should be
the same as for those without the syndrome," he
Chris and Kerry rely on Fearon and his staff to help
manage their select team of physicians, therapists and other health
professionals located in the Chicago area.
"There are so many things going on directly from this
syndrome that you need a team to handle all her medical needs, and
also a quarterback to lead the team," Chris says. "Dr.
Fearon is our quarterback."
The couple, however, has installed their own shotgun
offense, of sorts, to spread awareness about their daughter and
Apert syndrome. In fact, they started writing their silver-lining
playbook just minutes after Mary Cate's diagnosis.
"Please don't feel sorry for us. We're proud of Mary Cate,
we love her, and we'll be fine," they wrote in a mass
email to family and friends.
In the days after, Kerry started a blog and website to educate
everyone about Apert syndrome.
"In the short time she has been here, Mary Cate has taught
us more about courage and love than we have ever known,"
Kerry wrote. "She is a calm and easygoing presence in our
home. She could not be more loved."
This past Mother's Day, Kerry posted: "When I look back at
my post from Mother's Day 2012, I am sometimes amazed that we are
still standing... and smiling. It has been a whirlwind of a year,
and at points I feel like we have been to hell and
"There have been days that my heart has been broken into a
million pieces and I have laid on the floor and cried right along
with Mary Cate," she wrote. "There have been days when
she has woken up with a smile brighter than the sun, and hugged me
so tightly that I thought I would burst!"
Because of the blog and website, the couple has received
more than a dozen queries from new parents of Apert children
seeking the same answers the Lynches once sought.
They also routinely take Mary Cate into the world, not
only to get her familiar with other people but to get people
familiar with her.
"I took Mary Cate to the park yesterday and the kids just
flocked to her," Chris says, proudly showing off a
cellphone photo. "They asked questions about her looks, but then
they moved on and just played with her."
"We are determined to spread awareness. Educate, educate,
educate," says Kerry, who recently gave birth to the
family's second child, Maggie.
The family's educational campaign includes visiting
several schools around their Beverly neighborhood to chat with
students, host fundraisers for medical bills and share Mary Cate's
"My Mary Cate is a well-known organization in our
neighborhood and most of the students knew of Mary Cate and her
condition before our fundraiser," says Kristin Avram,
a teacher and student council moderator at Christ the King Catholic
The school hosted a "Dress Down for Mary Cate"
day and invited the family to meet with every
"The students were extremely receptive to Mary
Cate," Avram says. "This fundraiser gave them an
opportunity to meet her and ask any questions that children
frequently have when they are greeted with someone who is different
"Mary Cate smiled and giggled the whole time. She stole
the hearts of hundreds of students," Avram
This is all part of the Lynches' game plan, to educate the
world about Apert syndrome while Mary Cate steals the heart of
everyone she meets.
"We want the world to know about our beautiful, wonderful
daughter," Kerry says as Mary Cate shows off by
scampering across the living room floor into her mother's
Just like every other parent on the planet.
Jerry Davich is a freelance writer and father of two living in the Chicago area.
See more of Jerry's stories here.
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