'We don't let her fight alone': Family's heartbreak as four-year-old Lila has FORTIETH surgery while doctors battle to diagnose her mysterious, unnamed illness

Most people have a few operations in their lifetimes, but brave Lila Ruiz is about to have her fortieth - and she's just four years old. The adorable Tampa toddler was struck down with a mystery illness when she was just eight months old. Since then, doctors across multiple states have been battling to diagnose her debilitating condition, which affects the major muscles controlling her organs.

 

Fighter: Brave four-year-old Lila Ruiz, pictured left and right, is about to have her fortieth surgery as she battles a rare, unnamed disease

'She struggles every day with a very, very, very rare disease,' her mother, Maghann Ruiz, told CBS News, adding that Lila is the only person known to have the ailment, which remains unnamed. 'The disease is so rare, they can't really tell us what the future holds, or what tomorrow holds, if this is her last surgery, or if there's more in the future. They don't know,' said Ms Ruiz, confused and heartbroken. A happy, healthy baby, Lila picked up a strange bug at her Tampa daycare in 2009. '(She) just never got better,' Ms Ruiz said. 'It was some 24 hour bug. The kids were back at school. Lila was in the hospital for two weeks.'

Some doctors believe Lila has what is called Megacystis-Microcolon-Intestinal Hypoperistalsis Syndrome, which currently affects just 12-25 people in the U.S. But many medical professionals disagree. The panicked family began traveling to Texas, where Lila could be treated by doctors they trusted at Children's Medical Center. 'We've been in Dallas a lot!' said Ms Ruiz, who has a second, younger daughter, Stella. The Ronald McDonald House near the hospital has become their second home, putting them up for weeks at a time as Lila, brave-faced, underwent surgery after surgery over the past two years. To keep friends and family up to date, Ms Ruiz started chronicling each stage of her daughter's journey - whether successful or disheartening - on a blog, which has attracted well-wishers from around the globe.

 

Loving family: Lila Ruiz, pictured right with her mother Maghann, father and sister Stella, became sick when she was eight months old

Bug: A happy, healthy baby, Lila, pictured, picked up a strange bug at daycare in 2009

Sick: The panicked family began traveling to Texas, where Lila could be treated by doctors they trusted at Children's Medical Center

Medicines: Lila is constantly taking medicine and undergoing surgery as doctors try to treat her rare condition

Rare: 'The disease is so rare, they can't really tell us what the future holds,' Lila's mother said

'I promised myself I would write exactly what was going on,' she told the TV station. 'I never thought it would get so big.' Giving an insight into the stress not having a diagnosis has inflicted on the family, Ms Ruiz recently wrote to followers: 'What if we have tricked ourselves into believing that everything will be okay in the end, so we don't have to face the reality that maybe it won't?' But one thing Ms Ruiz is sure of is that her daughter is a fighter, and even though she is the only known person with the disease, she certainly isn't fighting alone. 'She fights hard and fights all the time. The promise we made to her is we're not gonna let her fight alone and we don't let her fight alone,' she said.

 Source: Daily Mail UK 

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