Elise Jackson was full of life around Christmas last year.
Then in January, Elise's mother Margaret said she came down with a strange rash.
"We thought it might have been the hand, foot and mouth disease. She had a lot of stomach pains. She didn't eat," she said.
It turned out Elise had an auto-immune disease. In April, she saw a doctor.
"He noticed she was kind of short of breath which I had noticed but didn't think much of it. And so he checked her oxygen levels," Margaret Jackson said.
The levels were low. She was hospitalized and a few days later was in intensive care.
"We think she could've gotten an infection like pneumonia or even a cold virus or something and it went in to the lungs," Margaret Jackson said.
Elise's immune system was unable to fight it.
Within two weeks of being hospitalized, she was hooked up to a lung bypass machine known as extracoporeal membrane oxygenation or ECMO.
"We initially put her on ECMO with the intention that she'd get better on ECMO she could go back to breathing and living with her own lungs," said Dr. Christopher Muratore of Rhode Island Hospital.
Muratore said blood comes from the patient to the machine and gets oxygen. Then the blood is returned to the patient.
But things went from bad to worse, and now it is because of the machine that Elise is still alive.
"It's absolutely her lifeline," Margaret Jackson said.
Elise has been on the machine for more than 120 days. And while she waits for a double-lung transplant, she remains determined. Elise walks with help, which amazes her doctors.
"She's done more things here with ECMO in this hospital, this region than most people have seen," Muratore said.
Elise is high on the transplant list. But because of her size, doctors haven't found a match yet.
"We're very hopeful. We know this will happen. It's a matter of time," Muratore said.
And that's what keeps her parents going.
"Knowing that she'll get her lungs, and every day is a day closer to getting her lungs," Margaret Jackson said.
Elise turns 11 years old on Sept. 25. And a new pair of lungs is her birthday wish.
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