Grace Gilbaugh knows what she’s doing Saturday night.
“I’m going to dance with Bruce Aune, Ray Blue and my dad – in that order,” the 9-year-old says.
Grace is referring to the first-ever “Behind the Mask” Masquerade Ball, a benefit charity ball designed to shed light on post-traumatic stress disorder while raising funds for the non-profit regional mental health agency that bears her name: the Grace C. Mae Advocate Center.
The ball will be held three days after Grace’s ninth birthday.
There was a time the center didn’t exist, just like there was a time Grace’s family – parents Scott and Patricia Gilbaugh and older brothers Aaron, Adam and Grant – wondered if Grace would live to be 9.
You wouldn’t know all that Grace has gone through by looking at her. Thirteen surgeries, including open heart surgery to repair congenital anomalies in the heart, have resulted in a petite blond with an infectious smile. The Keystone Elementary student acts like a third-grader, giggles like a tween and enjoys tormenting her older brother like any little sister would.
Grace was delivered by a planned C-section in February 2004. Patricia and Scott knew their daughter would have health problems; they learned several months earlier that Grace was missing a kidney and the one she had was covered with cysts. Prenatal testing also confirmed that Grace had a hole in her heart, fluid on her brain and problems with her spine.
“We determined to just let God decide her fate and we committed to seeing it through — no matter what pain we would have to deal with,” Patricia says.
Even so, the Van Horne couple spent more time planning a funeral than preparing a nursery.
“We put the crib together, but didn’t do anything else to prepare for her,” Patricia says. “Instead, we had picked out a satin-finished white coffin lined with pink fabric and a rose etched into the lid. We wanted to hope for the best, but be prepared for the worst.”
More than 20 doctors and nurses were in the delivery room, but Patricia says it was complete silence when Grace arrived. Grace didn’t even cry.
In addition to the problems everyone expected, Grace was born with her hips out of socket. She was hypertonic, which means she could not move any of her muscles, had spina bifida, her sex was undetermined, and most of her organs were underdeveloped. She had many congenital anomalies, including facial features that were asymmetrical, webbed toes and fingers, and missing bones.
“The only image I have of her birth is watching the delivery physician handing a blue, lifeless creature to another physician and saying, ‘This one is not breathing,’” Patricia says.
Six hours passed before Patricia and Scott knew their daughter had survived. Survival, the couple says, was the theme of their lives beginning that day.
It wasn’t until 2008 that the family had a term they could attach to their daughter’s condition: STAR syndrome. This rare X-linked syndrome characterized by webbed toes, telecanthus and kidney, genital and anal malformations.
“As far as we know, Grace is the only U.S. citizen diagnosed with STAR syndrome, and six people are diagnosed with it worldwide,” Patricia says.
Grace is identified as “Case four” in the only STAR syndrome study to date, but at a recent visit to a Cedar Rapids coffee shop, Grace is simply a girl in a sparkly red dress with a piece of chocolate cheesecake in front of her and a ball to attend.
“Every year, for my birthday, I want a birthday wish that has something to do with my mom’s work,” Grace says of the center, which her parents founded in 2009. “When I first told my mom I wanted to have a ball for my birthday, she said ‘Only if you clean up your room.”
The ball's theme, Behind the Mask, is designed to put a spotlight on the whispered-about illness.
“Adults and children who suffer from PTSD and other mental conditions feel as if they live hidden behind a mask,” Patricia says.
While most of Grace’s disabilities are hidden, she suffers from PTSD and anxiety. She has nightmares about being taken from home, and has difficulty turning off memories of surgeries and hospital videos playing on repeat in her mind. She and her family try to avoid triggers that affect her anxiety and PTSD, just as they try to evade simple illnesses that can wreak havoc on her weakened immune system.
Despite this, Grace doesn’t see herself as someone to pity. She cares about others as they care for her. She does her math homework, attends dance class and jokes about being the boss when visiting her mom at the Grace C. Mae Advocate Center. There are no surgeries in her immediate future, but there’s worry that her sole kidney won’t be strong enough to sustain her to adulthood.
Grace has plans for when she’s an adult. She’s going to be a doctor; a brain surgeon, specifically.
“Her story is quite remarkable, and to be entrusted with raising her is the greatest privilege I have ever been given,” Patricia says. “Watching over her and advocating for her sometimes feels like we are borrowing an angel, and she may not be ours to keep forever. For as long as we have her, the gifts she brings to us on a daily basis are beyond description. While we try very hard to give her a normal life, Grace does or says things on a daily basis that remind us she is an exceptional little being.”