Community Corner

Community Turns Out for Fundraiser for Brandon Girl Battling Deadly Disease

The fundraiser for Lila Ruiz took place Saturday, April 28, at the Winthrop Pole Barn.

For Manny Tzilvelis, owner of Formaggio's Italian Restaurant in Lithia, it was a labor of love.

He read an article about the fundraiser for the 3-year-old Brandon girl, Lila Ruiz, who suffers from a rare congential disease, and promptly volunteered to serve up pizza at the fundraiser in his mobile pizza truck.

He worked throughout the warm day, preparing pizza in the truck's four-deck oven. But he didn't mind the labor or the heat.

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"Lila is a doll. I fell in love with her," said Tzilvelis, who donated all proceeds from his pizza sales on Saturday to her medical care. "When you see this active little girl, it's hard to believe she has this terrible disease. It must be so tough."

Hundreds of residents turnrd out to support little Lila April 28 for the "Love Cures: Stay Strong, Lila, Fundraiser" at the Winthrop Pole Barn, 11349 Bloomingdale Ave., in Riverview.

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The little girl was born with megacystis microcolon intestinal hypoperistalsis syndrome. Basically, according to her mother, Maghann, it means her stomach, intestines, kidneys and bladder don't function correctly.

Little Lila is among 15 to 25 people living in the United States known to have the disease. Most usually die before their first birthday. But Maghann Ruiz said her daughter has always been a fighter.

Despite having endured more than 30 surgeries in her young life, Lila is a cheerful, active child as evidenced Saturday as she played with other children at what she called "my party."

Up until now, the Ruiz family has suffered in relative silence, enduring the hopsital stays and managing the medical costs incurred the best they could.

However, a group of friends decided to step in to help the family deal with the mounting medical expenses as well as the frequent trips to Dallas and Cincinnati for Lila's treatment.

Michelle and Greg Kukwa was among those friends. Members of the Samuel Bellamy Krewe, they came to the fundraiser dressed in pirate costumes and bearing beads to give out to the children.

"We're good friends with Lila's family and just wanted to do something to help," said Michelle Kukwa.

Vickie Williams of Sweet Confections was also on hand, selling cupcakes and other baked goods.

"I'm donating all the proceeds to Lila," she said.

While adults listened to live music, indulged in barbecue dinners and bid on items in a silent auction, youngsters enjoyed rides on a monster school bus, played on a bounce slide and had their faces painted.

Lila's parents, Maghann and Peter, said they were amazed by the show of support for their daughter.

"It just shows the community comes together when it needs to," Maghann Ruiz commented in an interview with Brandon Patch.

"It's been very difficult for them," said Lila's grandfather, Jerry Perry, holding Lila's little sister, Stella. "But they're strong and they have a lot of family and friends who care about them."

"It's hard. We take it one day at a time, and we're just very, very grateful she is able to still play and be happy on her good days," Maghann Ruiz said.

To donate online via PayPal, visit staystronglila.com. Or, call Sandy Martinez at 813-309-2395 or 813-681-2395.


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