Emily Owen faces a future of being fed through her stomach and her parents are unsure if she will ever walk.
Low muscle tone, including in her throat, and a number of other conditions have restricted her development since birth.
But as the South Shore youngster turned three years old last week, doctors were still baffled as to exactly what is causing Emily’s problems.
Hundreds of hospital visits, to Alder Hey at Liverpool as will as Blackpool Victoria, have failed so far to produce a diagnosis – and Emily, whose mum Kenzie Wilkes who has given up work to care for her full time, faces an ongoing round of further tests in a bid to get to the bottom of her situation.
“We have seen so many different doctors and everyone is working so hard to find the cause of Emily’s problem but they are all baffled,” said Kenzie, 27, who lives with fiancé David and their two children, Emily and Bailey, six.
She added: “Emily’s a very happy baby and an absolute diva who really makes herself known when she talks.
“But her situation left her frustrated, especially when she saw her older brother Bailey eating normally while she needed tubes because she couldn’t swallow properly.
“To try and help the situation, her dad David suggested fitting her favourite dolly with a feeding tube.
“Emily loves her dolls and won’t go to bed without them.
“Last year, Emily was fitted with a Mic-Key button, which means she can be fed directly into the stomach rather than through a tube and we asked for a spare button which we fitted in the doll.
“It has certainly helped Emily come to terms with her situation and she is unfazed by it as her dolly is fed in the same way she has to be.
“But we really want answers as to what is causing her problems, so we can have the best possible idea of what the future holds.”
Doctors first noticed Emily was a little slow in her development when she was admitted to Blackpool Victoria at six months with a chest infection.
“She still wasn’t crawling and couldn’t roll over by herself,” said Kenzie.
“They thought she might have spinal muscular atrophy, a genetic condition causing muscle weakness, from which most babies don’t survive more than a year.
“David and I were in pieces and we had to wait six weeks for the results.
“To our relief it was ruled out but no-one could tell us what was actually causing the conditions and that has been the situation since.
“Emily has now turned three and although we are averaging about four medical visits a month, everyone is still baffled as to the cause.
“We are just determined to keep her happy and make the best of her situation - but it would be so good to get some