Help Fight Gigi’s Battle: Dover teacher looking for answers to solve toddler daughter’s rare liver condition.

By Mariana Simioni

At first glance, one-year-old Giovanna “Gigi” Iachetta is a bubbly toddler with a radiant smile. But behind the giggles is a fierce little fighter living with Progressive Familial Intrahepatic Cholestasis (PFIC), a rare, incurable genetic liver disease affecting one in 100,000 children.

“She’s the happiest little girl,” her mother, Jennifer Iachetta, says, “when she’s not scratching her little body.” PFIC prevents Gigi’s liver from properly processing bile, causing relentless itching, vitamin deficiencies, stunted growth, and severe fatigue.

According to the Children’s Hospital of Philadelphia, PFIC is a rare genetic condition that progressively damages the liver. For children like Gigi, it can lead to liver failure and may eventually require a transplant.

At her worst, Gigi’s arms and legs were covered in scabs, caused by persistent scratching to relieve the itching symptoms. To help, Jennifer dresses her daughter in “footy” pajamas with mittens and gently scratches her, careful not to break the skin.

Jennifer’s mission is to help Gigi and all children like her beat PFIC. 

“A few years ago, there was no medication,” Jennifer says. “The only option would’ve been a liver biopsy, surgery, and eventually transplant.”  That possibility still looms, but for now, the family clings to hope. 

“People don’t realize there are pediatric liver diseases,” Jennifer says. “Even her pediatrician hadn’t heard of PCIF.” 

She is determined to change that. “I’m just a mom trying to do the best for her daughter—and maybe help someone else along the way.” She urges others to support research through organizations like the PFIC Network and the American Liver Foundation.

Gigi is now on a newly available medication—covered by insurance but priced at nearly $1 million annually—that may delay or prevent a liver transplant, which, while not a cure for PCIF, can halt the disease’s progression and relieve its symptoms. 

The journey for Jennifer and her husband, Luigi, began shortly after Gigi’s birth. “She was always itchy. We had to keep her hands covered with mittens,” Jennifer recalls. “I thought it might be a food allergy, so I was nervous to introduce new foods.” Doctors initially suspected eczema and prescribed creams, but nothing helped.

One afternoon, while Gigi was napping on Jennifer’s chest, Luigi noticed something alarming: “She’s yellow.” Her whole body had jaundice. They rushed Gigi to the emergency room. She was admitted and, after three days of tests and weeks of breathless waiting, specialists confirmed the PFIC diagnosis just after her first birthday in May; it was confirmed in June.

Luigi is an internal auditor for Wilton Reassurance, splitting his time between Connecticut and working remotely from home. So Jennifer’s mother, Joan Miseo, helps manage Gigi’s many medications and vitamin supplements and cares for their five-year-old daughter, Penelope, when Jennifer is teaching at Academy Street Elementary School in Dover.

“I have a whole spreadsheet that I make my mom follow,” Jennifer explains. “I don’t think Gigi could go to daycare with everything she needs.”

To donate or learn more about PFIC and support ongoing research, visit PFIC.org or the Liver Foundation’s website at liverfoundation.org.