The grieving father of a five-year-old boy who died in Sheffield Children's Hospital says his son would have had a "fighting chance" if medics had listened to his concerns.
Ayaan Haroon died in hospital eight days after being admitted for breathing problems on 5 March. He had an extremely rare genetic condition called Hace 1 and a history of respiratory illnesses.
Ayaan's father, Haroon Rashid said he pleaded with medics for certain treatments but felt they "didn't want to listen" and he was treated as a "nuisance parent."
Mr Rashid, 41, said: "I knew what treatment he needed because he has been in hospital before so I know what works for him.
"They dismissed me as, the best way of putting it, is as a nuisance parent."
He added: "If they had given him the treatment then maybe he would have had a fighting chance."
Mr Rashid has submitted a formal complaint to Sheffield Children's Hospital, which has launched an internal investigation into Ayaan's treatment.
After Ayaan's condition deteriorated his parents were faced with the decision of whether to switch off his ventilator.
Reflecting on that moment, Mr Rashid said: "It is the hardest thing when it's your child, but we knew he'd suffered so much.
"As soon as his ventilator was switched off, that was the end, he didn't breathe, that was the end of his life."
Mr Rashid said: "I saw him suffer. These very same hands held him for the first time. Imagine if you are a parent, how I felt when I had to bury him with the same hands.
"That's the worst thing that can happen to a parent."
Mr Rashid said that his son had previously been given faultless care for his condition as an outpatient at Sheffield Children's Hospital.
But he claims that Ayaan's stay in intensive care and on the ward where he spent the end of his life felt far from previous experiences.
Mr Rashid said he suggested treatments for his son which were rejected only for his recommendations to be accepted hours or even days later. He believes the delays allowed a virus, which caused Ayaan's death, to take hold.
In a statement, Dr Jeff Perring, medical director at Sheffield Children’s NHS Foundation Trust, expressed his "deepest condolences" to Ayaan’s family.
"The death of any child is tragic and I know that my colleagues who treated, and came to know, Ayaan during his short life will share in expressing these condolences," he said.
"The loss of a child while they are a patient at Sheffield Children’s is something we take very seriously. Our colleagues pride themselves on providing the best clinical and pastoral care for all children and young people who need it.
"We have received Mr Rashid’s complaint, which is very detailed and complex. There will be a thorough internal investigation of the care and treatment Ayaan received at the hospital between 5 and 13 March which will cover the concerns raised in Mr Rashid’s complaint."
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