By Howard Ludwig on January 31, 2014 8:14am | Updated on January 31, 2014 9:04am
BEVERLY — The best teachers don't always work in a school.
Mary Catherine Lynch of Beverly has been teaching people what it means to be different since the day she was born. And the charismatic 2-year-old is just now taking her message to schoolchildren.
Lynch was born at 8:45 a.m. on Dec. 8, 2011, at the Prentice Women's Hospital on Northwestern Memorial Hospital's Streeterville campus. Her mother, Kerry Ryan Lynch, knew her first baby was breech, and a C-section was planned.
Mary Cate entered the world crying loudly, which Lynch took as a positive sign. But the young mother knew something was amiss when her baby was rushed almost immediately to the neonatal intensive care unit. Lynch, a trained nurse, saw her newborn daughter only briefly — just long enough to notice her fingers and toes were fused together.
Meanwhile, Lynch struggled to recover from her C-section. Her husband, Chris, did his best to keep his wife calm, quell the concerns of family and friends waiting outside the delivery room and keep watch over his infant daughter.
At 5 p.m., a geneticist from the Ann & Robert H. Lurie Children's Hospital of Chicago arrived and diagnosed Mary Cate with Apert syndrome — a rare disorder caused by an extra protein on one of her genes. The result is extra bones and cartilage, causing a misshapen skull and melded fingers and toes.
About 25 children are born with this craniofacial condition in the United States each year, Lynch said, adding that she struggled to find information about Apert syndrome after the diagnosis.
Lynch cried for hours in the intensive care unit. She finally drew the strength to compose an email to family and friends, many of whom were unaware of the diagnosis and were anxiously awaiting pictures of the new baby. Lynch wanted to provide an update, but she also knew she didn't want to be bombarded with attention.
"I simply said, 'Please, don't call. Please, don't visit. But the No. 1 thing is please don't feel sorry for us,'" Lynch recalled.
This email became the launching pad for her blog — "My Mary Cate." Lynch has continued blogging ever since and has become a beacon for other families of children born with Apert syndrome.
One or two families each month find Lynch through her blog and her corresponding Facebook page — Apert OWL. Often, the emails come from parents of children recently diagnosed with Apert syndrome and desperate for information.
Those that do reach out are always pleased to hear that Mary Cate is doing well. During a recent visit, she was getting into a bit of trouble for stealing cookies from her 6-month-old sister, Maggie, and was even given a timeout for standing on the furniture.
Mary Cate has already had four surgeries. Children diagnosed with Apert syndrome can have upward of 60 surgeries throughout their lifetime, Lynch said.
Surgery on the skull is vital, as the brain will outgrow the malformed cranium. Without surgery, this can cause developmental delays, along with the loss of vision, hearing and fine motor skills. Mary Cate has already had one such surgery as well as two other procedures that separated her fingers and toes.
Mary Cate now has four fingers on each hand. Her speech is a bit delayed, likely because of the shape of her mouth. And she looks different. Other than that, she's typical little girl who plays with dolls, enjoys stacking blocks and is reluctant to take a nap.
That's the little girl that her mom wants everyone to know, and she's made a concerted effort to do just that. When Mary Cate was 5 months old, she visited her mother's grade school alma mater — Most Holy Redeemer Elementary School in suburban Evergreen Park.
Mary Cate has since visited 15 schools, mostly Catholic elementary schools on the Southwest Side and in the southern suburbs. Mary Cate visited schoolchildren at St. Jane De Chantal in Garfield Ridge this week and paid a visit to St. Cajetan Elementary School in Morgan Park last month.
In the fall, the children at Christ the King School at 9240 Hoyne Ave. in Beverly held a fundraiser for Mary Cate. The Catholic school kids were allowed to dress out of uniform in exchange for a small donation to help pay the medical expenses for the little girl with Apert syndrome who lives just down the street.
Before Mary Cate's visits, Lynch recommends students read "Wonder" by R.J. Palacio. This New York Times best-seller details the life of August Pullman, a boy born with a facial deformity. It's told from his perspective, as well as the perspective of classmates, his sister, her boyfriend and others.
After the students read the book, Mary Cate joins the classroom for a discussion. Her presence brings to life the discourse on things like bullying and what it means to look different. Mary Cate's introduction often comes just as preteens begin to feel self-absorbed and even act unwelcoming toward others, Lynch said.
Mary Cate is one of the most popular kids on the playground as a result of her mother's efforts to spread awareness of Apert syndrome. Rather than look away or make quiet comments, parents and children are eager approach the little girl that taught them what it means to look different.
"This is our life. We are not going to hide. We are not going to hide her," Lynch said.