A Hamilton mother is desperate for a diagnosis for her 4-year-old daughter, who cannot walk or talk and two months ago stopped eating.
Kerri Arnold first noticed her daughter Aalyha was different when she was not meeting her development milestones at 9 months old.
More than three years on, her pre-schooler is still in nappies, has a feeding tube and can barely manage to say five words.
The little girl smiles and interacts with others, but the noises coming from her are not words.
Aalyha has had about nine tests but her ailment remains a mystery and doctors have only been able to tell her she had a global development delay disorder - a general term used to describe a condition that occurs during the development of a child's life and covers a broad spectrum of disabilities.
But the single mother said that description was "too general" and was "like telling someone they had the flu".
And it didn't tell her why it was happening, how it could be helped or what would happen in the future.
As Aalyha nears school age, Ms Arnold is anxious to find out exactly what condition her daughter has.
"A psychologist has asked me twice why do I want a diagnosis. To me it's going to help me and help us plan for her future.
"Is she going to be able to get married, is ever going to be able to have kids - that's what my main thing is. And is she going to be able to be at school with other children; do I have to put her into a disability school full of disabled children or is she able to go mainstream?"
Aalyha has symptoms that cover neurodevelopment disorders including Angelman Syndrome, Williams Syndrome and Retts but so far the tests have been unable confirm any of these. A genetics and microray test also failed to identify anomalies.
Ms Arnold said it might be that Aalyha "was a mystery child and might just have a lot of different syndromes all rolled into one". But if that was the case, she still wanted to be told that.
Waikato District Health Board has been treating Aalyha and has referred her for specialist paediatric care in Auckland.
Ms Arnold said there was a six-month waiting list to go to Auckland, but she had been told by her daughter's paediatrician that because the genetic test had come back normal, it was unlikely the neurological tests carried out by the Auckland team would be able to detect anything.
Life became harder for mother and daughter in February when Aalyha stopped eating food or drinking the high-calorie milks she was prescribed to help her put on weight.
She is now fed through a tube.By Nikki Preston Email Nikki