DALLAS (CBS 11 NEWS) - Kids celebrate many milestones in the first few years of life.
Four-year-old Lila Ruiz, though, is about to hit one most people never see – her fortieth surgery.
"She struggles every day with a very, very, very rare disease," said her mother, Maghann Ruiz.
Her daughter, she says, is the only person known to have the condition, which remains unnamed. Believed to be genetic, the disease affects the major muscles controlling Lila's organs.
"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 Ruiz.
Lila was a normal, healthy kid, growing up in Tampa, for the first 8 months of her life, until she came home sick one day from daycare.
"Lila just never got better. It was some 24 hour bug. The kids were back at school. Lila was in the hospital for two weeks," said Ruiz.
Her family eventually began traveling to North Texas, where they found doctors they trusted at Children's Medical Center.
The Ronald McDonald House of Dallas became their second home, accommodating them for weeks at a time, over more than a dozen visits in the last two years.
"We've been in Dallas - a lot!" said Ruiz.
To keep up with friends and family, Lila's mother began a blog, sharing their every success, every frustration.
Even her doubts and weaknesses are exposed.
"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?" she wrote recently.
Ruiz said, it's become therapeutic.
"I promised myself I would write exactly what was going on," she explained. "I never thought it would get so big."
The blog now has followers from around the globe.
After a posting how much Lila loves to get mail, more than a hundred letters and cards poured in.
They now cover a wall in her bedroom at the RMHD.
"We tell her all these people love you and all these people are fighting for you and believe in you," said Ruiz.
Lila may be alone in having the disease, but her mother makes sure she never feels that way.
"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," said Ruiz.
If you want to write Lila, you can send cards to:
Ronald McDonald House of Dallas
C/O Lila Ruiz
4707 Bengal Street
Dallas, TX 75235
Ruiz hopes to raise money for the organizations that have supported her, including the Ronald McDonald House of Dallas. To learn more or make a donation, click here. Lila will be featured as the kid conductor this year at their annual fundraiser, the Trains at NorthPark. Click here for more information on the event.
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