Video report by Michael Billington
The father of a young boy whose death in hospital is being investigated says he is now facing the agonising decision about whether to send his daughter to the same facility for urgent treatment.
Haroon Rashid's five-year-old son Ayaan died at Sheffield Children's Hospital eight days after being admitted for breathing problems on 5 March.
The youngster had an extremely rare genetic condition called Hace 1 and a history of respiratory illnesses.
Mr Rashid claims medics dismissed his pleas for treatment until it was too late.
Now his 12-year-old daughter, Aroob, who has the same condition, needs treatment.
Mr Rashid said: "I've been put in a predicament. She potentially needs this operation on an urgent basis but on the other hand I don't want the hospital to treat her. I don't trust them.
"I break down every time I see [Ayaan's] pictures but we have to stay strong for our daughter. We don't have the luxury sadly to grieve. We still have another child who needs 24/7 care."
Fewer than 20 children in the UK are thought to be living with Hace 1, a genetic abnormality.
Mr Rashid said before his son's death, his care as an outpatient at Sheffield Children's Hospital had been faultless.
But he said that changed after he was admitted.
"I was asking for vital treatment throughout those eight days and no-one listened. Everybody dismissed me as a nuisance parent," he said.
He said his daughter's outpatient care up to now had been excellent.
Sheffield Children's Hospital said "sadness and sympathy" over Haroon's death had been "felt keenly by staff across the trust".
It confirmed that an external investigation would be carried out that would be "independent and transparent."
A hospital spokesperson said: "Through this investigation we will understand and identify areas of learning and best practice."
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