Baby formula shortage puts Santa Rosa mom in life-and-death struggle

SANTA ROSA (CBS SF) -- For 11 years, Keely Aguilar has fought day and night to keep her daughter alive.

But of all the battles her family has endured, running out of her only food source was one they never expected to face.

 Aguilar welcomed her daughter, Natalia, into this world 11 years ago. She knew from the moment she was born that something was wrong. It took eight years for doctors to figure out what it was.  

"Natalia is 11 years old and she has a very, very rare disease called Bainbridge Ropers Syndrome," Keely told KPIX. 

Natalia is one of only 200 people in the world, diagnosed with the disease. She has one of the worst cases.

"Her respiratory system, her GI (gastrointestinal) system, she's had developments delays," Keely said explaining the syndrome's devastating impact. "She's unable to walk, she doesn't speak, so it pretty much affects every one of her systems."

Natalia's stomach doesn't have the ability to break down foods so she has a tube inserted to her intestines. That's how she eats every night, she gets a steady stream of formula while she sleeps.

"Even despite the scary horrible things she lives with and endures as a human being and to know that I can't get her formula, a very basic, basic thing we should be able to get," Keely said.

EleCare formula is the one she relies on for her nutrition. It's made by Abbot. The company that shut down one of it's main production facilities due to the possibility of bacterial contamination.

"It has been probably one of the most stressful experiences that I've ever gone through," Keely said.

Like many 11 year olds, Natalia loves her brother, her dog and of course Justin Timberlake, but it's her mother's love that keeps her going everyday.

"She worth every bit of it," Keely said. "She's amazing, wonderful, and so strong. The things she has been through, no child should ever have to endure or live through. She's very special."