ADDISON – When Mayor Rich Veenstra’s declared Oct. 13, 2013, NephCure Foundation Day in Addison, David Bacarella felt a sudden rush of pride.
“It didn’t dawn on me until I was there that I’m from Addison,” said Bacarella who graduated from Addison Trail High School in 1984.
NephCure aims to find the cause and cure for Focal Segmental Glomerulosclerosis (FSGS), a rare kidney disease, which Bacarella’s 16-year-old daughter, Gina, was diagnosed with at age 4.
Her dad remembers finding out just before a family vacation to Boulder, Colo. David Bacarella watched his daughter play, making sure she had a good time but wondering how much longer he would have with her.
“We’ve had just this shadow that we’re working under hoping the inevitable wouldn’t happen, and it did,” David said. “Her kidneys failed.”
For 13 years, Gina Bacarella grew up like most kids, except for the medicines she took twice a day. She was active and played sports, and largely didn’t care about her FSGS.
“She never gave one iota about it,” David said, describing his daughter’s positive attitude.
Her parents, however, found support in the NephCure Foundation, which supports thousands of families across the country dealing with Nephrotic syndrome and FSGS. Since it began in 1999, it has dedicated more than $14 million dollars to research and education initiatives.
“When this first happened we felt so isolated from the rest of the world,” David said.
The Bacarellas arrived early last week to prepare for the Addison NephCure walk, which raised more than $11,000 and hosted 220 participants. Getting involved helped Gina’s mother, Julie Bacarella, stay positive.
“When you start giving back it kind of lifts you up a little bit more,” she said.
When the shadow the Bacarella family had managed to outrun for nearly a decade finally caught up with them, and Gina needed a kidney transplant, the hard choices flooded her father’s mind.
“I never doubted from Day 1 that I would donate a kidney,” Julie said.
The parents considered the overwhelming options. Either Gina could get a cadaver kidney, David’s or Julie’s. They knew that live donors were usually more successful, and that’s when David decided he would give his kidney because he wanted to do everything possible to make sure Julie would be there for Gina.
“What it ended up turning out to be was a gamble,” David said.
Even with his ability as an engineer to evaluate outcomes, David knew Gina’s FSGS could recur in a new kidney no matter where it came from.
“Gina is one of the lucky ones,” said Donald Ortale, the Central Midwest Regional Development Coordinator for NephCure.
Gina has appointments twice a month to check on her kidney, but since she received it in mid-July, her body has accepted it and there haven’t been any signs of FSGS. She continues to take anti-rejection medication twice a day, but the high school junior is back to her active lifestyle.
She’s been a member of the Metea Valley High School color guard since her freshman year.
After missing a lot of school at the end of her sophomore year because of constant doctor’s appointments and dialysis, she can focus better on school this year.
“It was a struggle at the time to keep up with everything,” Julie said about the pre-surgery schedule that required her to bring Gina to Chicago three times a week for full days of dialysis.
Gina is now determined to move on from the disease that’s been following her around her whole life. She was recommended to the Make A Wish Foundation and will spend a week next summer with her best friend at a Sea World camp exploring her interest in marine life, especially penguins.
While Gina hasn’t made any commitments to her future career, her father knows she’ll excel at whatever she chooses.
“Whatever she does, she’s going to be somebody to watch,” David said.