Watch the report by ITV News Meridian's Cary Johnston
A boy from Didcot in Oxfordshire, who suffers from a rare genetic condition, has been given an assistance dog to help him and his family.
Charlie has medical issues ranging from vision and hearing impairment, autistic traits, low muscle tone, and frequent chest infections.
Known as the "Syndrome without a name" it affects around 6,000 children each year in the UK.
Those affected can have complex medical needs and getting a diagnosis can be difficult.
Charlie's genetic condition is undiagnosed and the experts do not know the cause of the 11-year-old's illnesses.
Leanne O'Donnell, Charlie's mother, says it's "frustrating" because they cannot compare the illness to anything else and "don't know what the future is going to hold".
Lauren Roberts, Genetic Alliance UK said it's "quite easy to be dismissed" because many support systems first ask what the child's diagnosis is.
She said: "The reality is most of the families we work with say they find it very hard to get benefits, social care support and educational support."
There is a battle just to get through that first hurdle.
Charlie's family were given Ronnie, an assistance dog, by the charity Dogs for Good.
The two-year-old is a specially trained golden retriever.
Katie Steel from Dogs for Good, said Ronnie was chosen because his character and temperament meant he was "really good with children".
Katie Steel, Instructor, Dogs for Good:
Charlie's mother says Ronnie is a welcome support, who attends hospital appointments and will "instinctively go and comfort Charlie".
Leanne O'Donnell, Charlie's mother:
It is hoped the golden retriever will help the family, as they continue their difficult journey, living with a nameless genetic condition.