By Kathleen McAuliffe
“Ready, set, go!”
With a smile, Mary Cate Lynch, a Beverly six-year-old with Apert Syndrome, sent participants scrambling up 80 flights of stairs, to the top of the Aon Center, as part of the company’s Aon Step Up for Kids challenge. More than 3000 people raised over $300,000 for the Family Services Department of Lurie Children’s Hospital, event coordinator Janelle Romano said.
Among the participants was Mary Cate’s mother, Kerry Ryan Lynch, whose 12-person fundraising team raised more than $2,300 for Family Services, which provides art and music therapists, social workers and other emotional support to long-term Lurie patients and their families.
Ryan Lynch experienced those benefits firsthand when Mary Cate was diagnosed at birth with Apert Syndrome, a rare genetic condition characterized by the fusion of skull bones that prevents the brain from growing normally. During her first year of life, Mary Cate underwent months of extensive testing and multiple intense surgeries at Lurie, which took its toll on the entire family.
Before her operations, Family Service volunteers- called Child Life Specialists- prepared Mary Cate and her family for surgery and helped the family cope with the uncertainty ahead.
“A Child Life specialist came in and brought some toys and asked if there were any other toys we thought she’d like, to make things go a little easier and make her happier,” Ryan Lynch said. “I was like, ‘Oh my god, this is pretty amazing.’”
Six years later, Mary Cate, a preschooler at Christ the King School, does not have any serious medical complications or developmental delays. “But she still has a long road ahead of her,” Ryan Lynch said.
Her condition requires frequent outpatient visits to Lurie’s, and she will also undergo 10 to 20 additional surgeries throughout her childhood.
As she waits for her treatments, Mary Cate still crafts and plays with Child Life volunteers in the waiting room. Now that she’s older, a bond has formed, Ryan Lynch said.
“She was like, ‘Mom, are those two girls who made those crafts with me going to be there today?’” Ryan Lynch said. “So she remembers girls who make crafts with her. And the magic of it is they’re not just [there for patients admitted to the hospital], they’re also in the waiting room for outpatient appointments and they’re there to lend a helping hand and make the time go a little faster.”
When Mary Cate was recognized as the patient champion of this year’s challenge, Ryan Lynch felt compelled to help other families in their position.
“It’s incredibly rewarding because to have a child who’s had to be hospitalized quite a bit and deal with difficult situations, as a parent, you feel helpless,” Ryan Lynch said. “And to see other people who are able to bring a smile to a child s face, do something to make your child a little happier….you worship the ground that they walk on.
“So to participate in an event raising money for these volunteers to help kids like Mary Cate and thousands of other kids like Mary Cate, kids who may have to be hospitalized even more than her…It’s incredible.”
Climbing 80 floors- which at 1,643 steps amounts to nearly two miles, isn’t easy. But Mary Cate and the other Lurie patients in attendance proved a powerful motivator.
“I’m a nurse and I know how important it is to come out here for the kids, to race for the kids,” Jennifer Howard said.