CMN Miracle Kid: Carley Garcia

The Garcias may look like your typical all American family, but a major piece of their puzzle is missing from this family play date. Miles away, Kristal and Carlos Garcia's youngest daughter lies in her crib in the Neonatal Intensive Care Unit at University Medical Center.

"Carley was born on October 9, 2007," said Carley's mom Kristal Garcia.

But unlike the Garcia's other two daughters, Emily and Bailey, Carley was born with major complications.

"SED is the the spondyloepiphyseal dysplasia congenital. It is a form of dwarfism. Her form is considered to be a lethal form of dwarfism and most children with her form of dwarfism do not live to be two years old," said Kristal.

So far, Carley has beaten the odds surprising medical professionals who have dealt with cases like Carley's before.

"For someone to tell you that your daughter won't live a couple of days, a couple of weeks and then a couple of months to put a time frame on it - it's very hard right now we just kind of hold on to the hope she has already done a lot of things they said were not possible for her and we just hold onto the hope she can defy the odds," said Kristal.

Because Carley continues to surpass doctors' expectations she is now being considered for a rare medical procedure known as titanium rib expansion.

"Essentially what they do is cut the rib cage and put a titanium plate on each rib that allows for expansion of the chest," said UMC neonatologist Dr. Fortunato Perez.

It's a painful, expensive surgery that Carley would have to endure every six months for the next 15 to 20 years. The decision to perform surgery has heavily weighed on the Garcia's minds.

"We promised ourselves we wouldn't make her go through anything that would make it harder on her or be more painful on her. But then everyday and every week that she just surpassed - all the experts were talking she shouldn't be alive we started to open ourselves our minds to possibility of what we could do for her why don't we fight with her and see what we can do to keep her here as long as possible and give her a fighting chance," said Carley's dad Carlos Garcia.

While the Garcia's wait for a decision from doctors, they continue their daily trips to UMC to visit Carley. The visits are especially tough on Emily and Bailey who have not touched or held their sister since Christmas.

"With the flu season and RSV season, they shut down the NICU unit to sibling visitation so you know we can never be together as one family," said Carlos.

In the meantime, the Garcias are working with nurses and doctors to help Carley gain weight in preparation for her possible surgery.

"Three days ago Carley hit the eight pound mark which is kind of weird to say because with our first two kids they were both almost ten pounds when they were born and Carley is just now hitting the eight pound mark and she's six months old," said Kristal.

As for when it comes to saying goodbye to Carley each day, the Garcias surprisingly say it's gotten easier.

"In a lot of ways it's gotten easier because we have come to trust the nurses at the medical unit. They treat her like she is one of their own," said Carlos.

"Some of them buy her bracelets or clothes or special socks or shoes or hats and to think she means enough to them that when they were out on their own personal time that when they saw something they thought of her," said Kristal.

Carley also receives treatment from state of the art equipment purchased with donations made to the Children's Miracle Network.

"I've seen the telethon, the radiothon and I always thought how lucky I am to have a healthy child but I just left it at that but you really never know when it's going to be you," said Kristal.

"We have a very special relationship with CMN because they have helped buy essential equipment for us to continue giving services that is necessary in this community," said Dr. Perez.

While the Garcias believe Carley's future is ultimately in God's hands, they have no doubts the care and treatment Carley receives now will play a vital role in that outcome.

"I hope that at the age of five Carley goes to public school the same school system her sisters are in. I hope she'll have the ability to eat and taste foods and savor them the way we do," said Kristal.

"My hope for her is that she'll have some sense of normalcy and that we'll have no regrets of what we put her through to get her there," said Carlos.

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