Mother left to apply CPR on her son minutes before his death in hospital
A mother from Corsham in Wiltshire has told ITV News of the moment she tried to resuscitate her son as he lay dying at Bristol's Southmead Hospital.
The inquest into Nick Jones' death was held this week where the coroner ruled neglect and "gross failures" by medical staff contributed to his death.
Now, his family is calling for action over hospital failures and better treatment for patients with disabilities.
Sue Jones can just about look at photographs of her son Nick - but the family videos of his trips to Disneyland and school concerts have not been watched since he died in 2014.
Nick had a condition known as tubular sclerosis - that was diagnosed as a baby.
He had seizures and suffered from tumours growing all over his body.
His condition meant many hospital visits.
At Nick's inquest coroner Dr Peter Harrowing said he died from respiratory failure and cardiac arrest as a result of a mucus plug blocking his airway.
As this wasn't spotted sooner, he concluded that Nick's death was contributed to by neglect.
Dr Harrowing went on to conclude that the failure to conduct hourly observations on Mr Jones also amounted to a "gross failure" in nursing care.
North Bristol NHS Trust said it acknowledged the care Nick received "did not meet the standard of care that we expect to provide for all patients and particularly those with a learning disability".
Nick's mother hopes his case will be a catalyst for change in hospital culture, so her son, who was loved so much - didn't die in vain.