Our beautiful daughter could still be alive if she had been diagnosed at hospital, instead she died tragically aged three

Ryleigh Hillcoat-Bee died unexpectedly on November 8 2021 from a cardiac arrest after being admitted to Blackpool Victoria Hospital the night before.

But she had been in hospital three months earlier, on August 9, after becoming lethargic and floppy, when a number of abnormalities were discovered - and it was only after her death they were found to be symptoms of a fatal metabolic disorder.

Abnormally high potassium

Doctors found she had abnormally high levels of potassium in her blood, a fast heart rate and breathing rate and her urine was so dark it was the colour of Coca-Cola, but nurses said it could have been contaminated with diarrhoea and there seemed little concern about it.

Ryleigh was found to have "extraordinarily high" levels of Creatine Kinase which can indicate a muscle injury or disease but her parents were told she could go home on August 13 and there would be a follow-up check six to eight weeks later.

It was only the following March, four months after Ryliegh’s death, that tests undertaken at Newcastle and Sheffield revealed she had been suffering from a Lipin 1 deficiency, which led to her developing the extremely rare condition, rhabdomyolysis, which can cause cardiac arrhythmia, or irregular heartbeat, which led to her death.

At the start of a three day inquest at Blackpool Town Hall into her death, coroner Alan Wilson read out a statement from Ryleigh’s parents, Andrew Hillcoat and Caroline Bee.

The couple believe that if further tests had been carried out in the August, before Ryleigh left hospital, the illness would have been diagnosed and steps taken to tackle the dangerously high potassium levels and other symptoms which killed her.

They said “the false reassurances at the hospital” had prevented Ryleigh getting the treatment that could have saved her life.

“She would still be alive today if the core of her illness had been investigated.”

 Dr Andrew Morris, a paediatric consultant who is an expert on inborn errors of metabolism such as Lipin 1 deficiency, said that because the condition was rare, many doctors did not know about it.

He told Mr Wilson: “We don’t know how rare it is, there is a suspicion that many cases are missed.

“But it is rare in that, if one in 10,000 cases are common, we are looking at one in 200,000.”

He said the condition was hard to treat, and even though he had authored new guidelines to treat the condition with steroids, he said there were no guarantees it would prevent death.

Asked if it might have made a difference if Ryliegh had been taken straight to hospital in the November, he said: "It is difficult to say.

"It would depend if the local team had recognised this as a second episode of rhabdomyolysis which is extremely rare in children."

The inquest is proceeding for several days.