FOR almost 20 years, Queanbeyan mother Diane Dallinger has dedicated her life to caring for her family, in particular her 19-year-old daughter Breanna who suffers from a disability so rare it cannot be diagnosed.
From the day 19-year-old Breanna was born, she has required full-time care owing to her severe to profound, global and physical mental disability.
Doctors and specialists originally thought Breanna may have suffered from Smith-Lemli-Opitz syndrome, a disability that has only been diagnosed in ten other cases around the world.
Breanna however, had further problems that are not associated to this syndrome, making her condition unique.
"As you add symptoms, all of the syndromes disappear," Diane explains. "It's like Googling something and when you add to much information there are no results left.
"That's why Bree is her own syndrome, because no one else in the world has got all the same complex problems."
As well as the uncertainty of not knowing what is going to happen to their daughter, the lack of a diagnosis has also affected the financial assistance available to the Dallinger family.
"We don't get funding from a lot of the individual organisations because Bree doesn't fall into their funding category," Diane said.
With such a serious disability, every day is a struggle for Diane and it is impossible to predict what the future holds for her daughter.
"We know there will be a time when Bree won't be with us anymore," she said.
"We just hope we can be with her as much as we can and that she still gets the opportunities to be a part of the community for as long as she can."
Last week, Diane was presented with a NSW Carers Award to recognise and honour the work she has done in caring for her disabled daughter.
While Diane described receiving the award as 'overwhelming', she also said she struggles to accept recognition as in her mind she is simply 'being mum'.
Diane was nominated for the award by her eldest daughter Mikarlie who believed it was time her Mum received some of the recognition she deserved.
"Throughout Breanna's life Mum and Dad haven't really had the support networks that a lot of other carers have when they have a diagnosed child," Mikarlie said.
"They've just about done it all by themselves ... they even sold their house to help pay for some of Bree's treatment."
Breanna will celebrate her 20th birthday on Saturday.