Family and friends are having a fundraiser for Lila Ruiz on April 28 at The Winthrop Barn. All of the proceeds from the event will go directly to the Ruiz family for Lila’s ongoing medical care.
Lila Ruiz, of Brandon, looks and acts like every other 3-year-old girl. Her mom, Maghann Ruiz, will tell you she’s a sweet and hyper little girl who loves to play with her little sister, Stella. To the naked eye Lila is normal, one would never know that underneath her clothes she has tubes connected to her little body to keep her alive.
“She’s the strongest, most courageous individual you will ever meet in your entire life,” Maghann said about her daughter. Lila has a rare disease called Megacystis-Microcolon-Intestinal Hypoperistalsis Syndrome or MMIHS. It is a congenital disorder that causes decreased muscle tone in the urinary tract and bowel. As a result food, fluid and air cannot be passed through the body normally. The syndrome can be challenging to treat and the development of serious complications, such as sepsis and kidney failure.
The cause of MMIHS is unknown and it’s such a rare disease that only 15-25 people are alive with it in the U.S. Lila is one of them. Her parents realized there was something wrong when she was 10-months-old. She was getting stomach bugs that wouldn’t go away. She spent three weeks at St. Joseph’s Children’s Hospital in Tampa; only to find out they couldn’t treat her ailment. The family began traveling to Atlanta, Dallas and Cincinnati before Lila was diagnosed with MMIHS. In her short three-year time span, Lila has had 29 surgeries and had her 30 on March 1 of this year.
“If you ask Lila what is wrong with her, she’ll look at you and say, nothing is wrong with me, what’s wrong with you,” Maghann said. Lila doesn’t have an issue with her tubes. All of the travel and medical expenses have taken their toll on the Ruiz family’s finances.
“We have kept up with the expenses for the last three years because that’s what you do for your children,” Maghann said. Their debt continues to grow because as of now, there is no cure for Lila’s disease. Family and friends of the Ruiz’s decided to surprise them by hosting a fundraiser for Lila at The Winthrop Barn in Riverview on April 28. The event is from 10 a.m.-5 p.m. There will be food, music, a monster truck and car show, raffle giveaways and a silent auction.
The family has also set up a Website, www.staystronglila.com, where can read about Lila’s progress as well as make a donation. The Winthrop Barn is located at 11349 Bloomingdale Ave. in Riverview.