Maddie Kennedy was born two months early weighing just three pounds. She was suffering from gastroschisis - a defect that affects one in 3,000 newborn babies and means vital organs develop on the outside of the body.
Now aged three, she has had 16 operations to keep her alive.
Recalling the moment she was told the devastating news about her daughter, mum Becky, 24, from Consette, County Durham, told her local paper: "I was devastated when I was told Maddie had the condition.
"I'd never heard of it before and doctors said I should be prepared for the worst as she might not survive. It was heartbreaking."
As soon as she was born, Maddie was taken into theatre at Newcastle Royal Victoria Infirmary.
"I was able to have a quick look at her but I wasn't allowed to touch her," said Becky.
"The surgery took seven hours and it felt like a lifetime as I didn't know if she was going to make it or not."
She was unable to hold her little girl for the first three weeks of her life because of all the medical tubes keeping her alive. Maddie was in intensive care for four months and then spent a further three months in hospital.
Now, Maddie is unable to eat properly and every night she is hooked up to a life-saving machine which feeds her through her bloodstream.
She has been in hospital five times in the last month. One day, she may need a bowel transplant.
Becky said: "Maddie is so funny and everybody thinks she has a great character.
"She is one of the brightest three-year-olds I know and she is very brave. She deserves a medal for what she has been through.
"We have nearly lost her so many times - she's my little fighter."