RENSSELAER, Ind. (AP) - On her good days, it's near impossible to tell that 4-year-old Savana Calero has a life-threatening gastrointestinal disease that has already required her to undergo 12 surgeries in her young life.
The Rensselaer tot cannot eat and must carry around a black backpack that links feeding tubes to her chest, but she still regularly attends preschool.
And on a recent rainy Monday afternoon, just six days after her most recent stay at Riley Hospital for Children in Indianapolis, Savana didn't hesitate to jokingly scold her father, Jorge Calero, for incorrectly "solving" a Rubik's cube or beg her mom to switch placement of her siblings' portraits on the wall, so that Savana would be on top.
"She's a tough little girl," said her mother, Mary Calero. "When she feels better, you can't even tell she's sick."
But now comes the family's biggest challenge thus far: After 12 surgeries to remove dead tissue from her small intestine, Savana no longer has one. She was placed on a transplant list at 1 p.m. April 27, and the procedure is expected to cost the family $1.5 million, according to her maternal grandmother, Beverly Rusk.
Rusk has set up an account at Chase bank to try and raise donations.
"Riley gave us a paper that we were reading off of. It shows the prices of some of the surgeries, and this -- this is supposed to be $1.5 million," Rusk said.
The disease is called necrotizing entercolitis, commonly called NEC. It's an infection or inflammation that primarily effects premature babies and causes damage or death to intestinal cells.
Savana was born three months and six days early, and she weighed in at one pound and 15 ounces, Mary Calero said.
According to the Children's Hospital of Pittsburgh, necrotizing entercolitis affects only one in 2,000 to 4,000 births -- or about 10 percent of infants who weigh less than three pounds, five ounces. That's because their immature bowels are prone to infection.
Difficultly with blood and oxygen circulation and digestion also increases chances of developing it, according to the hospital.
In Savana's case, necrotizing entercolitis caused her small intestine to repeatedly flip and "clamp off," her mom said. She had her first surgery at 4 months old because a narrow passageway made it difficult for Savana to have bowel movements.
"We thought that one surgery would fix it. ... We've been dealing with this since she was 4 months old," Mary Calero said.
Savana needed six more surgeries during her first two years.
But her parents thought she was in the clear until this past December, when an infection viciously attacked her bowels, they said. She underwent five surgeries between Dec. 23 and Jan. 3 and was sedated and on life support for 15 days.
"We almost lost her because she got so sick," Mary Calero said. "We almost lost her three times due to her bowels flipping."
Savana is the youngest of four children and particularly close to her brother. It's difficult for them when Savana is hospitalized, her parents said.
Mary Calero will stay with Savana, while her husband, mother and a good friend help care for her older siblings.
It's unknown how long it will take before a match is found for Savana's transplant, the Caleros said. But the family remains optimistic -- as they have since Savana's birth.
That's indicated by a photo array on their living room of Savana when she was born. Her foot was equivalent in size to an adult's fingerprint to first knuckle.
"That's me!" Savana, dressed in Dora the Explorer pajama pants and a T-shirt that read, "I (heart) hugs," proudly proclaimed. "That's my foot!"
Information from: Journal and Courier, http://www.jconline.com
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