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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 each year in the U.S. with Apert, which 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 between the ages of four and nine 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. 

Learn about a , scheduled for Saturday, Aug. 18. 

'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, Tex. 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." 

My Mary Cate Benefit

When: Saturday, August 18, 1 to 6 p.m. 
Where: 115 Bourbon St., 3359 W. 115th St., Merrionette Park
Cost: $30 in advance, $35 at the door, $10 for children. (Ticket prices include food, drink, & entertainment)
Features:
Music by country artist Katie Quick; DJ Big Fish Music Productions. 

My Mary Cate T-shirts on sale, along with koozies and hair bows from Belle Up Maternity in Mt. Greenwood. 

For information or tickets, visit mymarycate.org.

Cat August 14, 2012 at 11:51 AM
Mary Cate is SO beautiful! As a mom of four kids--one with severe special needs--I am keeping you all in my thoughts and prayers. Best wishes for a highly successful fundraiser!
Danielle August 14, 2012 at 05:09 PM
I already adore Mary Cate and her parents, and have yet to meet them! The "my mary cate" blog is how I've been moved and touched by this amazing family's courage, strength, faith, and infinite love for their baby girl!!!!
Maribeth Majeti August 14, 2012 at 05:13 PM
We are unable to attend the benefit as we will be out of ttown, but my daughter and I will be going to get shirts and bows at the store in Mt. Greenwood! My thoughts are with you and I wish you the best. I have 2 children of my own an know what a precious gift you have. Hugs
sue August 16, 2012 at 02:39 AM
What a honor that you have been given the wonderful journey of being the parents to Mary, you will be strong and have he courage to raise a beautiful child who will bring much joy and happiness to your family. I have a Granddaughter who was born with Apert Syndrome also 6 years ago. She is amazing! She has given this family so much love and taught us so much through this journey with her. It tears my heart each time she has a surgery but she takes it with such strength and courage. I always feel that we are the ones who are honored to be her family. Hugs to you all and what wonderful work you are doing to spread the word about Apert Syndrome......Sue
Laura Mohan August 24, 2012 at 11:15 PM
http://a6.sphotos.ak.fbcdn.net/hphotos-ak-snc6/264793_422309224472694_1511338557_n.jpg Mary Cate is adorable. Here's Hannah's Story WHO IS Hannah "THE WARRIOR PRINCESS????? Hannah "The Warrior Princess" has Apert Syndrome a craneo-Facial condition which involves fusion of the head, hands, and feet resulting in webbed fingers, also fusion of the spine, elbows and other joints. Despite facing ongoing hospital stays here in Ireland and Great Ormand Street London, and surgery due to her condition, Hannah remains cheerful and upbeat, bringing a ray of sunshine in her smile to all she meets. Hannah has shown unbelievable strength just to be alive. Hannah was ventilated at birth and given only days to live, it looked like she may not make it through, but Hannah battled bravely, a trait she has continued to show throughout her life. Hannah is now 11 years old and has earned herself the name the "Warrior Princess" Hannah is a junior Black Belt at Family Martial Arts Drogheda where she trains regularly with her dad Sensei Mick Donnelly despite her obvious physical restrictions. Here Hannah is pictured with the biggest Martial Artist and Movie legend in the world Bill "Superfoot" Wallace who fell in love with Hannah when he visited Family Martial Arts Drogheda (and what a gentleman he is) "Superfoot" now remains in regular contact with the "Warrior Princess". PLEASE show your love and support for Hannah "The Warrior Princess" LIKE and SHARE this POST with all your friends!!!!

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