The family of a 14-year-old boy who died suddenly from an ‘exceptionally rare’ heart disease have finally been given answers almost a year after his death.

Malakai Conway was playing his PlayStation at his home in Prince Charles Avenue, Minster, when he collapsed and stopped breathing on July 3 last year.

Paramedics arrived at the teenager’s home soon after and resuscitation was carried out on Malakai – who was born with congenital heart disease – for a prolonged period of time before he was taken to Medway hospital.

But despite the efforts of medics, he could not be saved.

At his inquest, Malakai's family wanted to know whether his death could have been prevented.

The inquest heard Malakai had remained under care throughout his life and had had a number of surgical procedures and regular check-ups.

He was last seen by a consultant at the Evelina London Children’s Hospital in November 2019 for a review, at which he was reported to have been “well and asymptomatic”. Further interventions were not needed to be done at this stage, the inquest heard.

However, Malakai's father, Ron, said when he was seen six months beforehand, it was mentioned that Malakai could have a stent fitted as there had been a mild degree of narrowing in his heart. “If he had had it done, would he still be here?” Mr Conway asked.

Dr Salim Jivanji, a consultant paediatric cardiologist at the hospital at the time, replied: “No, unfortunately not. I don’t think even if he had a stent and significant narrowing there would have been a different outcome. The cause of his passing was unrelated.”

The inquest heard that in the weeks before Malakai's death, the teenager had developed arteritis of a Takayasu’s type, which resulted in him developing vasculitis, which led to a narrowing, which led to ischaemia, which led to his very sudden collapse and death.

Assistant coroner Sonia Hayes said: “This was different to complaints Malakai previously had. His severe heart complaints was not this.

“I am satisfied that the overwhelming evidence shows that Malakai's congenital heart problem and surgical procedures were not involved in his death.

“Sadly, and tragically, there is no definitive explanation as to why Malakai developed this extremely rare disease. I am satisfied the medical professionals did what they could.

“Malakai died of myocardial ischaemia due to vasculitis due to arteritis of a Takayasu’s type. This is a natural cause of death. Exceptionally rare and unusual but a natural death.”

She added: “Malakai's absence and death to his family has been devastating and I offer my sincere condolences.”

Malakai's parents, Ron and Michelle, and his older sister, also called Michelle, attended the two-day hearing at Maidstone's County Hall last week.

Speaking afterwards, having heard all of the evidence including first-hand accounts from a number of health professionals who had cared for Malakai throughout his life, Malakai's family said: "We, as a family, are just glad to be re-assured that Malakai's death was nothing to do with his congenital heart disease and that there really was nothing that could be done to prevent Malakai's death.

"We are still very much struggling to come to terms with the fact that Malakai developed such a rare disease called Takayasu's Arteritis and displayed no symptoms at all, just passed away suddenly with no warning. But it's now time to let Malakai rest."

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