A COURAGEOUS five-year-old who amazed doctors throughout her life has lost her battle with a rare chromosome disorder.

Millie Carey was born with Edwards 18 Syndrome, which meant she was severely disabled, could not walk or talk and had to be fed through a tube.

But she stunned doctors with her progress and was known as a “little miracle”, after being given just minutes to live at birth.

The condition, in which those affected have three of the number 18 chromosome, meant Millie also suffered epileptic fits and often had difficulty breathing.

She was admitted to Poole Hospital on April 18 before being transferred to Southampton General Hospital’s paediatric intensive care unit and put on a ventilator. She passed away on Sunday April 21 from pneumonia.

Millie, who attended Langside School in Poole, spent 18 days in hospital last year with fluid on her lung, which weakened the organ and left her more susceptible to further colds and infections. She was alo hospitalised with a chest infection earlier this year.

Mum Tina, from Moorside Road, West Howe, said: “Even though a death sentence was there constantly we had to put it to the back of our heads. She was the only child in Bournemouth to have survived that long.

“She was very cheeky. She loved school, Langside was one of her favourite places. What they do with the children there is amazing. She adored Julia’s House as well.

“She’s left a real hole, there’s no way of filling that.

Dad Mick, 44, who gave up working when Millie was born to help with her 24-hour care, added: “Her little sister Jemmalei, four, was her best friend. They played together and Jemmalei would sing and dance with her.

“She was amazing, she amazed everybody.

“She was so happy, never cried, never winged. She was a tough little girl. She was our whole life.”

What is Edward's Syndrome?

Edward’s syndrome, also known as trisomy 18, is a genetic condition. Nearly three quarter of babies with the syndrome are miscarried or stillborn, a third of babies born alive will die within a month of birth because of life-threatening medical problems and those who survive beyond one year will have a developmental disability.

In almost all cases of Edward's syndrome, the child develops three copies of chromosome 18 in each cell of their body, instead of the usual two.

The extra genetic material in Edward's syndrome disrupts the baby's normal course of development.

Babies with Edward's syndrome will have grown slowly in the womb and will have a low birthweight.

Physical signs of Edward's syndrome include a small, abnormally shaped head, a small jaw and mouth, long fingers that overlap, with short fingernails and clenched fists, low-set ears and smooth 'rocker bottom' feet (with a rounded base). 

Babies with Edward's syndrome also typically have heart and kidney problems, feeding problems in infancy, leading to poor growth, breathing problems, hernias in the wall of their tummy, bone abnormalities such as a curved spine, frequent infections of the lungs and urinary system and a severe learning disability.