Tragic story of two brothers is at the forefront of national awareness campaign

It is an incurable disease few people have heard of, yet it claimed the lives of two young Lynn brothers in the most tragic way.Mitochondrial disease can surface in the body or be triggered at any time in life – and it took the life of one baby when he was just five days old and his brother ten years later.The charity My Mito Mission has just launched a national campaign to raise awareness of the condition, and what happened to Freddi and Ronni Johnson is at the forefront of it.

Ronni was born in Lynn on August 2, 2012 by emergency C-section, but his mum Danielle suspected there was a problem right from the start.“Even though I was a first-time mum and quite young I knew something was not quite right with him health-wise,” she said.“He was a sickly baby, suffered from projectile vomiting and was floppier than an average baby but I was continually reassured he was fine.”

Danielle’s second pregnancy with Freddi a couple of years later ended in tragedy within days of him being born on August 19, 2014. Danielle, 34, said: “My pregnancy with Freddi was really difficult and I went into labour at only 26 weeks. That was delayed a while by steroids and Freddi was born by planned caesarean at 38 weeks.“He was found to have high lactate levels from his initial tests and was immediately whisked away for special care. It was heartbreaking being on a ward where the other mums and babies were together, but I was without Freddi. “Tragically, we lost Freddi at just five days old with tests revealing it was due to mitochondrial disease.

“It is impossible to explain how devastating it is to lose a child of any age. I did not deal with it very well at all and tried to put aside all the emotions and carry on almost as if it hadn’t happened.“In November of that year, I had a stroke at just 24 years old and a mental breakdown. A long recovery saw me eventually start to come to terms with what had happened to Freddi.”But there were still health problems with Ronni, and medical investigations revealed a diagnosis of mitochondrial disease when he was around three. He had a form called Pyruvate Dehydrogenase Complex Deficiency which had affected both boys to very different degrees. The gene that caused it has not yet been identified.

In 2018, Danielle and her husband Keron had a daughter, Emily, who does not have the disease.Danielle said: “Ronni adored his little sister and amazed his doctors and everyone else by how well he did despite the (disease), tiring easily but not needing a wheelchair as might be expected.”He struggled to reach physical developmental milestones, could not participate in activities like other children his age and needed a specialised diet but often fell ill.

She added: “He struggled with his health from when he started teething as a baby. His eyes would be all over the place and he would be lethargic, ideally needing a rest every 20 minutes or so.“But nothing stopped him as he tried every way possible to do what other children did, without a fuss, and gave everything his all. We never knew when he was in pain as he would never show it.” Ronni loved football, supported Manchester United, and as soon as he got home from school would change into his kit to go out for a kickabout with his friends. He also loved American wrestling, with Roman Reigns his favourite.

Tragedy struck when the family went on holiday to Rhodes in Greece in July 2023. On the first day, Ronni suddenly became seriously ill.Danielle said: “Ronni was playing one minute and buzzing because he was on holiday, then suddenly was sick and his breathing deteriorated before he spiralled into irrecoverable organ failure and passed away.“Our handsome, cheeky boy, so passionate about football, was laid to rest on his 11th birthday, very close to his baby brother, at Gayton Road Cemetery in Lynn.”

Now the family is committed to helping others with mitochondrial disease, and are raising awareness and money to go towards research through My Mito Mission.This was set up by Christine Beal in Elland, West Yorkshire, after she lost her own daughter, Emma, to the disease in 2017 at the age of 28.

Christine said the research is “critical”. “It can help in the treatment and research for many other conditions which is why we say that mitochondrial research matters to millions,” she added.“The more money we can put into mitochondrial research the more a lot of other conditions could benefit.“Although there is no cure for mitochondrial disease, treatments to manage symptoms are available and there is active research taking place globally to find a cure. Thanks to research, we are learning more daily about mitochondrial disease.”Ronni and Freddi’s aunt, Karen Baker, is a qualified counsellor and is helping several families living with the condition. Funding is also needed to expand her service to more families. Karen said: “We are in the process of establishing a therapeutic service for all those impacted by mitochondrial disease.“Even though my great nephews are no longer with us, my commitment to supporting My Mito Mission remains unwavering.“This cause is incredibly close to my heart and I’m dedicated to helping others navigate the difficult journey that comes with this illness.”