Charlize's GIFT

During her darkest days, Julie Gravina thought she’d never stop crying. Now, her daughter is preparing for her first Christmas concert and helping find a cure for the condition that nearly took her life. Genevieve Gannon reports.

- Genevieve Gannon

Five-year-old Charlize Gravina is leaping down the hallway of her NSW home in a tutu, exclaiming, “I love the sparkles,” as the skirt flips and floats around her. Big sister Amelia, nine, appraises her from the couch. “She only wears dresses that twirl, so she’s in twirling heaven,” she says. Charlize obliges with a pirouette before running over to the wall where there’s a photo of her twin brother. “What do you think, Zacky?” she asks, spinning again. Taking his smile as a sign of approval, she then bounds across the room to model her dress for her mother, Julie.

“She’s very connected to him,” Julie says of Charlize’s twin, Isaac, who died when he was one year and nine months old. “She prays to him to keep her well. She says, ‘Keep me strong, keep me healthy’.”

The cherubic faces of Charlize and Isaac cover the walls of the Gravinas’ home. The family wanted to capture as many memories as possible because they didn’t know how long they would have with the twins. The Weekly has been invited to spend the day learning about the genetic disorder the Gravinas confronted, and their mission to ensure nobody else has to go through what their family endured. It’s a harrowing tale, filled with sorrow, but also hope. Right now, there’s a sense of excitement as Charlize looks forward to performing in her first-ever Christmas concert.

“I always dreamed that she could do something like that,” Julie says. “She’s very excited.”