Friends and relatives of a “lovely” and “cheeky” 10-year-old boy who died on a family holiday in July will honour his life with a fun day later this month.
Lynn youngster Ronni Johnson, who had a rare genetic condition, died in hospital after becoming unwell on a trip to Greece with his mum Danielle, dad Keron and sister Emily.
And now his loved ones are planning a fun day at Wootton Park on Saturday, September 23 to raise awareness of the condition – which also claimed the life of Ronni’s younger brother Freddi five days after his birth in 2014 – and funds in the hope of one day finding a cure.
An inquest, held at Norfolk Coroner’s Court on Friday, heard that Ronni was born with Pyruvate dehydrogenase complex (PDC) deficiency – a genetic mitochondrial disorder that can often result in death in childhood.
Senior coroner for Norfolk Jacqueline Lake said Ronni’s cause of death was pulmonary oedema – a condition caused by a build-up of fluid in the lungs, and said she was satisfied he died of natural causes on July 10.
The inquest also heard from a consultant paediatric neurologist, Dr Alasdair Parker, who said Ronni’s parents had gone “above and beyond many times over the last years”.
Since his death, Mr and Mrs Johnson have launched a fundraising appeal called Ronni and Freddi’s Mito Mission in memory of their sons and in the hope of raising awareness, support, funds for research and ultimately a cure for mitochondrial disease.
The appeal has so far gathered more than £5,000, with the support of charity My Mito Mission, which helps affected families to run their own campaigns.
Mrs Johnson said they have also received a wealth of support from the local community ahead of the family fun day on September 23.
“So many different companies have come together for us to make the event bigger and to get a lot of money which is really good,” she said.
“It’s lovely, it really is – Lynn has come together for me and my husband, they have helped with support and funds.”
The fun day, which starts at 3pm and is free to enter, will include inflatables, face painting, entertainment, stalls and food.
The family has been delighted by items they have received for a raffle including hair straighteners donated by the James Dyson Foundation and a voucher from Lynn-based Pizza Slice Guy.
The event will also include a charity football match which will kick off at 4pm – which is fitting as Ronni was “crazy” about football.
“He loved watching the football with his dad on the sofa,” Mrs Johnson said.
“He also loved playing his Xbox, he would play Fifa against his grandad, and he’d run in and say ‘Mum, I beat Grandad 10-1’.”
Mrs Johnson paid tribute to Ronni as a “cheeky chappy” and a “lovely little boy, who would do anything for anyone”.
“He was such a happy little boy, who had a constant smile on his face,” she added.
To donate to Ronni and Freddi’s Mito Mission, go to www.justgiving.com/fundraising/RonniJohnson
