A little girl battles chronic condition with some help

Published:

By SARAH WHITMAN

Tampa Bay Times

RIVERVIEW, Fla. -- Maghann Ruiz chronicles her daughter's story with photos on the family blog.

Asleep in her child-sized hospital bed, 3-year-old Lila cuddles with her mom.

Sporting pigtails and a "Hello Kitty" shirt, a smiling Lila pulls her 18-month-old sister around in a wagon.

Sipping juice after surgery, Lila doesn't seem to notice the camera.

In many ways, Lila Ruiz is a typical little girl. She loves to paint, wiggle and watch cartoons. She wears pink cowboy boots and collects temporary tattoos. She swims or goes for bike rides. She eats banana Popsicles.

But in her short life, Lila has undergone more than 30 surgeries.

While she appears healthy on the outside, what makes Lila different is on the inside, her mother says.

It's called megacystis microcolon intestinal hypoperistalsis syndrome. The rare condition, considered a smooth-muscle disorder, limits the functioning of Lila's bladder, kidneys and intestines. The toddler is one of 15 to 25 people living with the condition in the United States. She needs daily medical treatments and receives most of her care out of state.

"The hard part is, we don't have a whole lot of answers for her," Maghann Ruiz says. "No one can tell her what next week will bring, much less what life will be like five years from now."

So far this year, the Ruiz family has spent only a few weeks at home. To date, they've taken nearly two-dozen flights from Tampa to Children's Medical Center in Dallas and Cincinnati Children's Hospital, where surgeons skilled in treating the condition reside. Maghann Ruiz totals the family's out-of-pocket airfare costs at about $15,000.

Lila's dad, Peter Ruiz, owns Soundwaves, an auto-stereo business in Tampa. Maghann Ruiz left her career as a project manager to care for Lila. Even with medical insurance, the bills hurt.

After Lila was flown from one hospital to another last year, her parents received a bill for $130,000. They never asked for help.

Then came the "Angels."

"Angels for Lila Ruiz" started with Facebook. Lila's grandmother, Nancy Ruiz, launched the page earlier this year as part of a fundraising campaign she and family friends led. The page links to the family blog, staystronglila.com, where people can make online donations.

"(Lila's parents) never complain," says Angels co-founder Will Martinez. "But I can definitely tell it's not easy on them. I wanted to do something to help."

Martinez said people nationwide have reached out to show support.

"I can't get over how wonderful people have been," he said. "People have donated over 4,000 frequent-flier miles to help the family with travel expenses."

For a recent fundraiser, Martinez lined up monster trucks, bounce houses, food vendors and live entertainment. More than 500 people attended, including Lila, who returned recently from Dallas, where she received some good news.

After being rushed to Children's Medical Center there for emergency surgery, Lila learned that a fistula, an abnormal connection between an organ and another structure, seen earlier in her abdomen, was gone.

Lila is not a medical statistic, Maghann Ruiz says.

Most infants diagnosed with Lila's condition never see a first birthday. Generally, patients cannot digest food.

But Lila goes from the hospital to the playground. She says her favorite food is Thai chicken on a stick.

Lila is still too young to fully understand her diagnosis. At home, all her medical supplies are colorful and covered in stickers. She makes up nicknames for the equipment.

Sometimes she asks, "Did you have tubes when you were my age, Mommy?"

Though doctors say no cure exists for Lila's condition, her family remains positive. She likely will battle bowel and bladder problems her whole life. In years to come, however, she might need fewer surgeries or even go to school, Maghann Ruiz says.

For now, when people ask the Ruizes how they do it, they respond with a phrase that's posted on the family blog.

"We take it one day a time."

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