'Her condition is so rare, it doesn't even have a NAME': Heartbreak of mother whose daughter suffers from uncontrollable vomiting and could die before she turns six

When Ava Galley, now four, from Cheshire, was born, her mother Nichola, 35, just had enough time to glimpse a pair of eyes and a tiny nose before her new daughter was whisked away by nurses.

By the time she next saw her daughter, she was in the midst of a tangle of wires as doctors frantically tried to work out what was wrong with the tiny baby and find a solution for her continual vomiting.

But more than four years on, Nichola and the doctors are no wiser and while they have managed to fix Ava's heart problems, precisely what sort of genetic disorder she suffers from remains unknown.
'It was like a punch in the stomach because we'd been given the all-clear from the amnio test,' says Nichola of the moment she discovered that her tiny baby wasn't the healthy daughter she had hoped for.
The pregnancy had been tortuous but we just thought she was going to be a very small baby. We were in the recovery room and laughing and joking when the doctor came in.

'The way the news was delivered to us… he walked into the room with a nurse and delivered it so abruptly - even the nurse was shocked.'

Convinced Ava wouldn't survive, doctors tried to prepare a devastated Nichola and her husband Paul for the worst but, much to the surprise of medics, the little girl clung on.

Initially, the biggest challenge was working out how to feed her: with Ava unable to suck and prone to vomiting whenever she was given milk.

'She was poorly and it turned out that every time they fed her, they were drowning her because the milk was going straight to the chest, straight to the lungs,' remembers Nichola.

'It was a good four months before we got her home and she has spent pretty much the first three years of her life were in hospital. This summer is the first that she hasn’t been in and out all the time.'

Despite her improving condition, Ava who suffers from microcephaly [an unusually small skull] in addition to the genetic disorder, is still unable to walk unaided, talk or feed herself.

She also continues to vomit uncontrollably, which means she regularly suffers from chest infections and needs a special bed, a feeding pump and round-the-clock care from her mother who has been forced to give up a promising career to care for her.

'She still vomits and I never know quite how much food to give her or whether her body is going to tolerate that feed,' explains Nichola