To lose one child to mitochondrial disease is devastating, to lose two beautiful boys is beyond any words. Please read Ronni and Freddi's story and help their family raise awareness ...
Ronni was born on the 2nd August 2012 by emergency caesarean section and even though I was a first time mum, and quite young – I knew that something wasn’t quite right with him health-wise. He was a sickly baby, suffered from projectile vomiting and was floppier than an average – but I was continually reassured that he was fine.
My pregnancy with Freddi a couple of years later was really difficult and at only 26 weeks I went into labour. That was delayed a while, and after a planned caesarean Freddi was born on 19th August 2014. He was found to have high lactate levels from his initial tests and was whisked away immediately for special care. It was heart-breaking being on a ward where the other mums and babies were together, but I was without Freddi.
It’s impossible to explain how devastating it is to lose a child, of any age. I didn’t 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 the November 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.
Ronni’s issues started to be taken seriously and investigated at last. He also received a diagnosis of mitochondrial disease. It’s a form called ‘Pyruvate Dehydrogenase Complex Deficiency’ and it affected both our boys to very different degrees, which often happens with mito. The gene that caused it hasn’t yet been identified.
In 2018 my husband Keron and I were delighted to welcome our daughter Emily to complete our family. She’s thankfully unaffected. Ronni adored his little sister and amazed his doctors – and everyone – by how well he did despite the mito, tiring easily but not needing a wheelchair as might be expected.
Ronni was playing one minute, then suddenly was sick, 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.
I’m studying to be a counsellor because I’m keen to use my experiences to help others. We are also determined as a family to raise hopes of treatments and a cure for everyone affected by mitochondrial disease through Ronni & Freddi’s mission.
… is a truly fitting legacy for our beautiful boys. Any support that you may be able to give us will be hugely appreciated including, if you can, a donation to Ronni’s tribute fund.
Any awareness or funds we can raise, will in turn raise hopes of treatments and a cure – and prevent others being told that nothing can be done to halt the illness.
Whether you support Ronni & Freddi’s mission, any other single mission or My Mito Mission as a whole – it’s all the same great cause.
Spreading the word, following, sharing, as well as donating and raising funds are all really helpful and valued. From running a race to hosting a bake sale, homing a collecting can to giving out Ronni & Freddi’s Mito Mission leaflets – there are so many ways in which you can get involved.
If you’d simply like to donate to Ronni & Freddi’s mission, choose a way that suits you below.
Regular donations are the most powerful way to support our vital work, allowing us as a small, high-energy charity to plan and build from a strong foundation.
We need a 1000 strong team of amazing people to donate any amount from just £2 a month. 1000 is a lot, but – one by one – we know that we can reach it. Find out more here.
For any other amount or frequency (eg weekly, quarterly, annual), simply contact us
We’d love your support with our fundraising… and we can provide supporting materials. Just ask!
Fundraise and shop!
Other ways you can support us
Visit our Support Us page for more inspiration!
