Family raises awareness for craniofacial condition Apert Syndrome

CHICAGO (WLS) -- Apert Syndrome is a craniofacial condition that affects the head, feet and hands. It's extremely rare.

One of the biggest challenges children with Apert Syndrome face is lifelong surgeries.

A South Side family is determined to increase awareness about their daughter's disability as well as learn more about the syndrome.

"I like to say I almost started the blog the night she was born because we didn't know about this prenatally," said Kerry Lynch.

Kerry and Chris Lynch have two beautiful girls. Maggie is 1, and Mary Cate is two-and-a-half.

"I had a textbook, picture-perfect pregnancy, except Mary Cate was breach. I was scheduled for a C-section on December 8th of 2011. Chris was actually watching the C-section so they asked him to sit down behind the curtain while they were figuring out what was wrong," Kerry Lynch said.

After Mary Cate was diagnosed with Apert Syndrome, a series of surgeries started.

"She had two separate surgeries to separate her fingers and toes. She had one corrective surgery where they had to cut her open ear to ear and kind of remold her skull to make room for her brain to grow," Kerry said.

Mary Cate also needs ongoing therapy from both professionals and parents. She is active and happy, but her dad worries about her as she gets older.

"The day-to-day stuff of her maybe not being able to manipulate something very well because she only has four fingers, or maybe not hearing things as well," said Chris Lynch.

Besides using her blog, Kerry and Mary Cate visit schools.

"We show them Mary Cate's Facebook page, bring it up on the boards at the school and open discussions amongst classes about difference and show them pictures of Mary Cate's hands, pictures of her playing piano and at gymnastics class and doing everything every other kid does, and explain that being different is not a bad thing, that's just how God made each of us unique," Kerry Lynch said.

Kerry says there are about 25 children born in the U.S. with this syndrome. She also says that it's a spontaneous genetic mutation that occurred at conception.

For more information visit: www.apert.org or the My Mary Cate Blog