Latest News for Parents & Carers

A new musical built around the true story of a promising young rugby player paralysed in a teenage accident is movingly full of the joy of being alive.

Autumn has a rare genetic neurodevelopmental disorder which just 17 other people in the UK have been diagnosed with. Her parents Ben and Emily Shaw are raising money for Yellow Brick Road Projects, which supports families with children who have HNRNPH2 and funds research.

The mother of a six-year-old girl dying of childhood dementia fears they may be forced to live out her final years in hostels – after losing their home. Hollie Self was recently told her daughter Phoebe has just five years left to live due to the rare genetic condition Mucopolysaccharidosis (MPS) – but even less if her symptoms continue to deteriorate at their current speed.

An artist has spoken out about the discrimination she says she and other disabled musicians face in an industry that “isn’t accessible”. Right Keys Only is an electronic dance musician who has a condition called Erb’s Palsy, which means her left arm is partially paralysed.

Dozens of young autistic people have died after serious failings in their care despite repeated warnings from coroners, BBC News has found. Their investigation found issues that were flagged a decade ago are still being warned about now. The government says £4.2m is being invested to improve services.