Ryleigh Hillcoat-Bee died due to an 'extremely rare' disorder that affects just one in 200,000 people, an inquest heard
The heart-broken parents of a toddler who died from a rare disorder say they feel let down by doctors after being told her illness was a 'one-off'. Ryleigh Hillcoat-Bee died in Blackpool in November 2021 aged just three-years-old, LancsLive reports.
Doctors discovered that Ryleigh had elevated levels of potassium in her blood as well as a high heartrate and breathing rate. At one point Ryleigh's urine was "as dark as Coca-Cola" but nurses suggested the sample could have been contaminated with diarrhoea even though Caroline and Andrew had not noticed any.
Three months after Ryleigh was discharged from hospital she spent Saturday November 6 watching Blackpool Illuminations and the following day visited a soft play centre. The family returned home where Ryleigh ate fish fingers, chips and veg but after she went to bed she woke up at 8.30pm being sick, the court was told.
After Ryleigh died doctors were left baffled by what had caused her to develop the cardiac arrhythmia, or irregular heartbeat, which led to her death. Months later, after multiple tests were carried out by experts at Alder Hey, Sheffield and Newcastle hospitals, a repeat whole genome sequencing revealed she had a Lipin 1 deficiency.
Dr Morris described how the deficiency Ryleigh had been born with was "extremely rare" and occurs in around one in every 200,000 people. Dr Morris said that he had recently authored revised guidelines advising that patients are treated with steroids but he said, even then, "there is no guarantee it will prevent death".
"It is very difficult to say," he replied. "It would depend if the local team had recognised this might be a second episode of rhabdomyolysis and rhabdomyolysis is extremely rare in children."Tributes to Ryleigh After Ryleigh's death her parents posted a tribute online to her in which they said: "We love and miss you each and every day that passes Ryleigh chops. You are our sunshine and always will bee. We look for you in the stars shining brightly.
United Kingdom Latest News, United Kingdom Headlines
Similar News:You can also read news stories similar to this one that we have collected from other news sources.
'Docs gave false reassurances about our daughter, three months later she died'Ryleigh Hillcoat-Bee died due to an 'extremely rare' underlying metabolic disorder, an inquest heard
Read more »
All you need to know about The Great British Sewing BeeWhere can you watch your favourite soft crafts-based TV show? Read on...
Read more »
Who is Sewing Bee’s new host Kiell Smith-Bynoe?Everything you need to know about the BBC show's new presenter.
Read more »
The Great British Sewing Bee review: Finally – it’s fashionableNew host Kiell Smith-Bynoe and a surprisingly stylish cast has breathed new life into the format 10 series in
Read more »
Who is Sewing Bee’s new host Kiell Smith-Bynoe?Everything you need to know about the BBC show's new presenter.
Read more »
The Great British Sewing Bee: Who is Kiell Smith-Bynoe and where is Sarah PascoeAre you read for a raft of new folk for us to bond with, laugh with and cry with?
Read more »