Milestones for special girls offer hope for all

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Abby Scott with her mom and dad at Disney World.

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Six months ago I interviewed Kerry Lynch and Denise Scott, two Beverly moms who are raising children with special needs. Their courage and stamina were so inspiring, I wanted to check back to see how their daughters were doing.

Things have been busy - and never dull - for 7-year-old Abby Scott, who has cerebral palsy, and 1-year-old Mary Cate Lynch, born with Apert syndrome, a rare genetic disorder characterized by malformations of the skull, face, hands and feet.

"I have no ideas where the time has gone," said Abby's mom, Denise Scott. Abby has had no surgeries or hospitalizations and is enjoying second grade and Brownies. She will make her First Holy Communion in May. Nothing is easy for Abby, but, said Scott, "she never quits."

In October Abby's parents surprised her with the dream of a lifetime - a trip to Disney World. For five days she was in her element.

Though Scott worried about accessibility issues ahead of time, "It was very accessible and people went out of their way to make Abby feel comfortable and welcome," she said.

Highlights of the vacation were a stop at the Bibbidi Bobbidi Boutique, where Abby was transformed into a princess complete with hair, makeup, and gown; leading the Princess Parade through downtown Disney; and meeting and obtaining autographs from all the characters.

Mary Cate celebrated her big first birthday in December with a slew of family and friends, and is pretty much on target for a "typical" one-year-old. She has five hours of therapy each week and is smiley, cheerful and active. Big family news: In July, she'll become a big sister.

In March, though, Mary Cate will have cranial vault remodeling surgery in Dallas. Because a suture in her skull fused while she was in utero, her skull bones and brain have not been able to grow normally.

An incision will be made ear to ear, her eyes will swell shut for about five days, and the swelling in her face/skull will take about six weeks to two months to decrease.

"We are told that there are no nerve endings in the skull, so the recovery should not be terribly painful ... I sure hope so," Lynch said.

Last year's awareness events, one to help defray the cost of Mary Cate's mounting medical expenses; the other to support The Center for Independence, where Abby receives therapy through conductive education, were great successes. Nearly 2,000 friends and family packed into Merrionette Park's Bourbon Street to rally around Mary Cate and send love and well wishes as she readied for her first surgery. "It was overwhelming and humbling to see so many people show their love and support for Mary Cate and our family," Lynch said.

Likewise, the Center for Independence fundraiser welcomed a large and enthusiastic crowd to its 1920s-themed gala. No children are turned away, so fundraisers are essential to keep the doors open to all.

Although the moms are realistic about possible challenges and less than desirable days in the upcoming year, the future continues to look bright for both girls.

"[Abby] has grown so much this year and I am so proud of her," Scott said. "I just want her to keep it up, and more importantly be happy," Scott conceded.

With medical issues taking precedence soon enough, Lynch is relishing every small victory and second of peace and quiet.

"My hope is that Mary Cate continues to blow us all away in all that she does. We also hope to keep spreading awareness of Apert Syndrome to our communities and beyond," Lynch said.

Even if you never meet Denise, Abby, Kerry and Mary Cate, you can help them by teaching and modeling acceptance and understanding. Children - and adults - need to learn that special needs people are just like us in many ways.

"I am amazed by the amount of kindness and empathy most children are capable of," Scott said. "Abby is so happy and comfortable in her own skin, but I have lost count of how many times I have sat down and cried when I saw how some kids act around her. I never want her to be sad because of how someone treats her."

For more info:

The Center for Independence

http://center-for-independence.org/help_cfi.html

http://www.mymarycate.org/#!donate

Jennifer Mifflin and Suzanne Witt are two Chicago-area writers on hiatus from daily assignments. When they aren't chasing terriers and a two-year-old or playing chauffeur to pre-teens, they throw caution to the wind and chronicle their journey as moms, friends and fellow neurotics on ChirpyGirls.com