Fundraiser to Take Place Saturday for Brandon Girl Battling Rare Disease

Her big smile and even bigger personality hide a lifetime of pain.

Three-year-old Lila Grace Ruiz of Brandon was born with a rare congenital disease with a complicated name, 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 who loves to play games and adores her daddy, Peter.

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

However, a group of friends have now stepped 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.

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 Pole Barn, 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. has volunteered to bring its pizza truck to the fundraiser. And at 6046 Winthrop Town Center Ave. is donating 20 percent of all purchases when customers show a copy of the flier (attached to this story).

"Lila has been in and out of hospitals in multiple states since she was 10 months old," said family friend Casey Fitzpatrick, noting that the little girl suffers from bladder and bowel issues 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."

Keeping her daughter healthy is a constant battle, said her mother, who keeps family and friends informed of her daughter's progress in a blog called "Stay Strong Lila."

"Lila had been feeling fantastic, at least until last week when she just wasn’t her energetic self and was running a fever," said Ruiz. "We took her to her pediatrician where we learned that she has a very severe urinary tract infection and kidney infection. This is not unusual for Lila and is one of the biggest risks of her disease. She has fought similar infections most of her life."

She said Lila is now on a strong antibiotic for 10 days with hopes that it will clear up the infection.

The problem is, Lila has become resistant to most antibiotics for bacterial infections.

"So we have our fingers crossed that this medication will work. Infections are a constant battle for Lila...some things never change," she said.

Nevertheless, the little girl is looking forward to attending the fundraiser in her honor.

"We are getting very excited about the fundraiser. Lila refers to the event as her party," said Ruiz. "We are so happy that she will be able to attend. Last week we had our doubts. We are really looking forward to seeing all our friends, family and supporters. It should be a fantastic day."

To learn more about Lila, visit her website, www.staystronglila.com.

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