Gracie Bagadiong has three dreams in life: To train dolphins, become an Indianapolis Colts cheerleader and see herself on the Jumbotron at Great American Ball Park.
On Sunday, one of those dreams will come true.
The 10-year-old Mason girl with special needs will throw out the ceremonial first pitch before the Cincinnati Reds take on the Los Angeles Dodgers.
Gracie, a fourth-grade student at Mason Intermediate, was selected for the honor by the pulmonary department at Cincinnati Children’s Hospital Medical Center, which is hosting a special Reds night for patients and their families. Big brother Jacob will assist her on the field.
“She feels like she’s a superstar,” said Cherie Bagadiong, Gracie’s mother.
Gracie suffers from an undiagnosed neuromuscular condition that’s left her wheelchair-bound and on a ventilator for the past two years. She’s also deaf, has low vision and peripheral nerve damage has left her without use of her arms.
It’s a medical mystery that’s baffled doctors since her symptoms began at age 3, her mother says.
Gracie was born healthy and reached normal developmental milestones through her first years, learning her first words and taking her first steps. When she developed an odd gait, her parents – Cherie, a stay-at-home mom, and Nolan, a systems engineer at a financial company – thought she’d outgrow it.
It wasn’t until Gracie’s language skills plateaued that the Bagadiongs grew concerned.
The diagnosis was surprising: Sometime between ages 2 and 3, Gracie had become severely and profoundly deaf. What’s more, X-rays showed scoliosis, an abnormal curvature of the spine.
Gracie Bagadiong of Mason at a Cincinnati Reds game in 2011. Rosie red is her favorite mascot. Photo provided
The findings launched a slew of visits to specialists, none of whom could offer any answers. Gracie was fitted with a cochlear implant and enrolled in a school for deaf children.
But the troubles didn’t end there. At age 5, Gracie developed a lazy eye and vision issues. Doctors diagnosed her with optic nerve atrophy, a condition that causes the optic nerve to deteriorate. Then, over a period of two weeks, she lost all control of her arms.
Experts at Cleveland Clinic examined Gracie and ran tests but her condition remained a mystery.
After a series of steroid treatments, Gracie regained some use of her arms and began to walk with the assistance of a walker. But about two years ago, she began losing strength in her core. Within months, she was unable to walk or even sit up without assistance.
Soon after, Gracie began to breathe funny. Then she stopped breathing.
Cherie recalls driving 90 mph on Interstate 71 to Cincinnati Children’s, where a team of doctors and nurses revived a blue Gracie.
After a 57-day hospitalization and consult at Johns Hopkins Hospital in Baltimore yielded no answers, doctors placed Gracie, 8 at the time, on a ventilator and feeding tube and outfitted her with a power wheelchair. The Bagadiongs had to adjust to sharing their home with round-the-clock nursing care.
“It flipped us upside-down,” Cherie said. “It’s constant planning who’s doing what with Gracie at what time.’’
Gracie’s limitations don’t stop her from leading an active and fulfilled life, her parents say. She joined a cheerleading squad for children with special needs and paints pictures for her friends using a mouthstick and touch screen computer. She likes to watch sports games with her dad and is always up for shopping with mom.
“She doesn’t think of herself as disabled. She never gets frustrated with herself about what she can’t do. She’s more focused on what she can do,” said Cherie.
The past year has yielded some hope. Doctors have begun weaning Gracie from the ventilator and she’s gained weight – she’s up from 42 to 52 pounds – and strength.
“Medically, it’s terribly difficult. When she improves, we get excited,” said Cherie. “You think how her life would be different if she could do gymnastics or run, but she’s so cute and funny I wouldn’t want her to be different. She’s the way she is because her whole life added up and she’s Grace.”
Posted in: Community, News |