Estimated read time: 2-3 minutes
SALT LAKE CITY -- Four months ago, KSL visited a young Salt Lake couple getting ready to take their daughter to Boston to find out why she was shrinking and losing weight.
Little Maggie Agnew's muscle mass was disappearing. Though she was 10 months old then, her esophagus was still the size of a premature infant.
Later this year, her parents, Michelle and Sean, took Maggie to Boston Children's Hospital hoping to get some answers. Now, after four weeks in Boston and dozens of specialists, they are back home with Maggie; but they still don't have any answers.
"She is an anomaly, and they don't know what's really wrong with her. Like, she burns 40 percent more calories than a normal kid, and they don't know how or where," Michelle explains.
In fact, Maggie can burn up lots of calories if she just cries or fusses, or gets sick. And she has none to spare.
"She's similar to a car that burns twice as much fuel, and you have to keep up with the gas to keep her going," Sean says.
Right now, lipids are fed through a central line in the chest. Calorie-loaded nutrients move through a gastric tube. Maggie's holding her own, but still, at 16 months old, her tiny feet are still the size of a premature infant.
"I think it's taken a toll on us, but she's improving and she's doing things she couldn't do a few months ago, and that's good to see," Sean says. "We're just hoping for the best for her."
Doctors say Maggie might have a mitochondrial disease, but tests, so far, have come up negative.
She not only continues battling just to grow, but struggles with breathing problems. She needs a ventilator at night. Her lungs are vulnerable to infection.
Even after recovering this past week from a bout with the swine flu, Maggie's parents say she's a miracle.
"She's just a miracle kid, you know, a little miracle baby," Michelle says. She fights so hard to stay in this world, and she's just amazing. She's an inspiration to us."
"It makes you very humble," Sean says.
Sean and Michelle make the most of every day. Perhaps they'll even take Maggie to Disneyland when she turns 2. For now, they walk what they call a "hopeful path," ever searching for that elusive diagnosis.
If Maggie doesn't improve significantly, the Agnews will take their daughter to Atlanta or New York, where doctors will take a fresh sample of muscle tissue. Meanwhile, experts continue analyzing her blood samples, again searching for answers.