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Community Steps Up for Child with Rare Syndrome

Eight-month-old Mary Cate Lynch has a rough road ahead as one of only 25 U.S. children born with Apert Syndrome each year. Her parents are spreading the word about Apert—while everyone shares their love for the little girl.

Fresh from her midday nap, 8-month-old Mary Cate Lynch bounces happily on her mother Kerry's lap. She giggles and reaches for ruffles on her shirt, and peeks at the stranger on the couch next to her. To Mary Cate, life is as simple as the woman holding her, kissing her cheek and stroking her hair. 

Her innocence is bliss for Beverly resident Lynch and husband Chris. Mary Cate, born with the rare craniofacial syndrome Apert Syndrome, has a long—likely painful—journey ahead of her. She is one of 25 children born with Apert each year in the United States. The disease is visible in malformations of the skull, face, hands and feet.

From now until the age of 20, "MC" will face up to 60 corrective surgeries and numerous therapies, some of which have already begun.

In July, doctors inserted tubes in Mary Cate's ears to help with drainage. Next, they will start the process of separating her fused fingers and toes. At 15 months, surgeons will begin remolding her skull to allow room for her brain to grow. Procedures tentatively planned for her between the ages of 4 and 9 have the most potential of altering her physical appearance, Lynch said. 

"Once I realized how hard of a life she's going to have, I knew I was going to have to step up and be her advocate," Lynch said. 

'I knew something was majorly wrong.'

—Kerry Lynch, of the mood after Mary Cate was delivered. 

When the couple learned they were pregnant, they decided not to learn the sex. Lynch, an Evergreen Park native and Chris, an  native and  graduate, chose one name for each sex and enjoyed a "healthy, normal and awesome" pregnancy.

At delivery time all seemed well, except that Mary Cate was breach; the doctors decided to deliver by C-section. Chris watched as doctors lifted Mary Cate into the world. Lynch listened as the first cries escaped her mouth—but then worried as jubilant voices dropped to concerned whispers.  

Twelve to 15 doctors flooded the room and crowded around Mary Cate. The anesthesiologist told her there was "something" wrong, but that she had never seen it before.

"I could see the look of fear on the anesthesiologist's face," Lynch said. "I lost it. I knew something was majorly wrong."

The first few days were a rash of panic, tears and Google searches, as the pair tried to grasp what this meant for their daughter. They learned that the syndrome was caused by a random mutation early in conception. It could result in cognitive impairment, cleft palate, blindness, deafness or heart defects. With little information and heavy hearts, the couple readied to release the news to friends and family. They pored over an email announcement for hours before clicking "send."

And then it began. By the next day, 200 emails had arrived: words of encouragement and support from family, friends and families of children with other syndromes. The couple's South Suburban roots grow deep, and supporters began planning a fundraiser to help offset the family's extensive medical expenses. 

Lynch was initially reluctant for the attention until she began connecting with other Apert families—some who needed guidance and others who offered it. She started a blog to document "My Mary Cate," and as personal emotional therapy.

"She got dealt a tough hand of cards, and we need to be as strong as we can be," Lynch said. 

From day 1, I knew my next mission in life would be to raise and spread awareness of Apert Syndrome. ...

Why not show her off?  Why not parade her around?  Why not make her life normal?  Why not educate myself, my family, friends, community and the world? ...

MyMaryCate.org

The community's response has been overwhelming, Lynch said. For most of the surgeries, they'll travel to Dr. Jeffrey Fearon and Craniofacial Center at Medical City in Dallas. Travel, surgeries, treatments and therapies will be costly, so friends organized an August fundraiser. Others give whatever or however they can. Students from  (Lynch's grammar school) chipped in, too, with the proceeds from a lemonade stand sweetly donated to Mary Cate. 

"It helps me, to be able to show these kids, that there's going to be a lot of different-looking people, but she can still run around on the playground with them," Lynch said. 

She photographs each step of Mary Cate's life, features, and changes, and plans to continue with each surgery. She plans to compile them into a book, and when Mary Cate begins kindergarten, hopes to read the class the story of her brave daughter and how far she's come. 

"I know it's going to be very physically painful for her, and that makes me physically ill," she said.

Lynch aims to raise awareness and tolerance for her daughter, before she notices her own special appearance and differences. She hopes Mary Cate will embrace rather than fear them.

"This is my passion, my job, my number one love, so I want to share the wealth!" Lynch wrote in a blog. "I wholeheartedly believe that people are inherently good, and that ignorance comes from lack of knowledge. 

...Why not let everyone fall in love with My Mary Cate, and know who she is, so that as she lives her life, everyone will already know that she is Mary Cate, she has Apert Syndrome, she does look different, but she is still a beautiful, happy and sweet little girl." 

 

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