It's an extremely rare genetic congenital disorder that kills most infants before they turn 1.
But Lila Ruiz of Brandon is now 3 years old and still fighting despite having more than 30 surgeries in her young life.
Lila suffers from Megacystis-Microcolon-Intestinal Hypoperistalsis Syndrome (MMIHS). It’s estimated that only 15 to 25 people with MMIHS in the U.S. are alive today.
"Lila is a fighter," said Casey Fitzpatrick who is helping to organize an event to raise funds for the little's girls overwhelming medical expenses.
On Saturday, April 28 from 10 a.m. to 5 p.m., friends will throw the "Love Cures: Stay Strong, Lila, Fundraiser" at the Winthrop Barn Theatre, 11349 Bloomingdale Ave., in Riverview.
The fundraiser is a full-day outdoor benefit event with food, music, raffle giveaways, a silent auction, balloons, face painting, a bouncy house and car show with a monster truck. All proceeds donated before, during and after the event will go directly to assist Lila's medical costs.
"Lila has been in and out of hospitals in multiple states since she was 10 months old," said Fitzpatrick, noting that the little girl suffers from bladder and bowel idsues and will need medical care for the rest of her life. "But, amazingly, it hasn’t dampened her spirit or lessened her enthusiastic love of life."
The organizers are currently seeking event sponsors, auction items, donations and volunteers for the event.
To help, contact Teri Meek at 813-622-6570 or 813-270-7186. To learn more about Lila, visit her website, www.staystronglila.com.