Our Grandson, Josh, is one of about 6,000 disabled British children born every year who have no diagnosis for their condition – they make up around 40 per cent of all disabled children. They are often referred to as SWAN children – suffering from Syndrome Without A Name.
They may have significant learning difficulties, facial features such as low-set ears, heart conditions, vision problems and epilepsy. Many, like Josh, cannot walk, talk, or eat without assistance.

Problems vary enormously from child to child, and SWAN is not an illness in its own right. Experts believe these conditions are genetic. But each case is thought to be the only one of its kind, which makes a proper diagnosis – and prognosis – incredibly difficult.

Each is given the same utterly frustrating news by doctors: there is no way of knowing what the future may hold for their child. Treatment is a matter of fire-fighting, tackling problems as they arise. It is impossible to pre-empt difficulties because there are no previous cases to reference.

For Hannah and Josh, normal life is planned around a seemingly endless round of medical appointments.

Any funds raised will help to improve their quality of life between appointments.

Keeping a smile on Josh's face is our main goal.