A 10-year-old who suffered from a rare genetic condition died in hospital while holidaying with his family in Greece.
Ronni Johnson, who lived at Front Way in Lynn, was born with Pyruvate dehydrogenase complex (PDC) deficiency – a genetic mitochondrial disorder that often results in death in childhood.
An inquest at Norwich Coroner’s Court on Friday found that he passed away on July 10 due to natural causes linked to the condition, after he took unwell while on a trip to Rhodes.
Summing up, Jacqueline Lake, senior coroner for Norfolk, said she was satisfied that Ronni died of natural causes due to the progressive nature of his disorder. His cause of death was pulmonary oedema – a condition caused by a build-up of fluid in the lungs.
“I would like to offer you my sympathy at the loss of your son,” Ms Lake told Ronni’s family.
A statement from Ronni’s mother Danielle Johnson had been read out earlier in the inquest, describing him as an “active baby” who was “always on the go”. However, he used to become ill while teething, and would sometimes projectile vomit after drinking juice.
Around the time of his second Christmas, Ronni became unwell and was admitted to hospital. He was subsequently given a hospital passport which allowed him to visit at any time after that.
When Mrs Johnson gave birth to their second child Freddi, they realised “something was not okay” – and tests revealed he too suffered with a PDC deficiency. Ronni was subsequently tested for the same condition and was diagnosed with it.
Ronni’s sibling died just five days after being born.
The condition both suffered from essentially resulted in their bodies not producing enough energy. This meant that Ronni was placed on a Ketogenic diet which encouraged low carbohydrate intake and more meat and fat.
His mother’s statement said that although he knew he could not do “everything like a normal child”, it did not stop him from “trying his best”.
Last Christmas time, a viral infection resulted in him becoming “very weak” – and another in May was the “worst he had”. He began to hallucinate and Mrs Johnson attempted to contact the hospital but stopped after the visions ceased.
After recovering, Ronni was able to play football with his friends again and became excited about both going on holiday and starting high school at the end of the summer.
The family arrived in Greece on July 9, and the next day Ronni woke up feeling “normal” – eating cheese, salami, eggs and bacon for breakfast. Mrs Johnson said he was looking forward to playing in the swimming pool and had not complained of feeling unwell.
For lunch on the day of his death, he ate vegetables – something deemed “unusual” because he would normally have meat.
Later, after returning to their room, Ronni became pale and his breathing pattern changed. Mrs Johnson phoned a taxi, which transported her, her son and two other family members to Rhodes General Hospital.
They attempted to put a mask on the ten-year-old’s face when they arrived, but he kept pulling it back off. Hospital staff then originally refused to offer him a drink, although when told he had drank in the taxi, they provided him with water.
He was placed on a drip, and Mrs Johnson said various doctors provided differing diagnoses. His throat began to close up, with fluid filling his lungs.
He was provided with medication, and after a short while staff told his family that he was responding well and breathing better. Doctors suggested it may have been asthma-related, although he had never been diagnosed with that.
Plans were in place to transport Ronni to an intensive care unit by air ambulance, but before that, a doctor ran past his mother and into the room where he was being kept. Soon afterwards, she was informed that her son had died.
At Friday’s inquest, a statement from Dr Mike Champion – a consultant in paediatric inherited metabolic diseases at Evelina London Children’s Healthcare who looked after Ronni – said his condition was progressive and life-shortening.
Another from Dr Alasdair Parker, a consultant paediatric neurologist at the University of Cambridge Hospital, said it was “a pleasure to support Ronni and his lovely parents over the last few years”.
On Ronni passing away, his statement added that it was “a scenario recognised in the care of children with this deficiency”.
“They went above and beyond many times over the last years,” Dr Parker said of Ronni’s parents.
