Ronni & Freddi's

Mito Mission

Based in King's Lynn, Norfolk

Little Freddi may have been here for just a very short time - but he made a huge and lasting impression. He lives on in the hearts of his loving family including his big brother, Ronni. His legacy continues in the family’s mission to help others.

Read

Ronni &

Freddi's

Story.

As told by their mum,
Danielle

Danielle & Freddi

Ronni was born on the 2nd August 2012 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.

 

Tragically, we lost Freddi

at just five days old.

Ronni & 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 has 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’s now eight and doing really well

health-wise despite the mito.

He tires easily but doctors are amazed that he’s not in a wheelchair or without his eyesight which might be expected. He’s a polite, sensitive little boy who’s passionate about football and also loves his x-box – especially playing fortnight and FIFA 21.

I’m studying to be a counsellor because I’m keen to use my experiences to help others. Educating more people about mito is really important to me as well. We want to help raise hopes of treatments and a cure for all families like ours, and to make sure that Freddi’s name and legacy lives on. He’ll always be a much-loved and very special part of our family.

Thanks for reading my story.

Ronni & Freddi’s family
November 2020

We want to help stop

this happening to others

Ronni who has mitochondrial disease

It’s important to raise hope
for everyone who’s affected.

To learn that your child – or children – have a life-limiting condition is truly shocking. When you’re also be told that there are no treatments or a cure it’s like a nightmare. We want that to change.

Freddi’s short life can continue

to make a difference.

Any support you could give
will be so appreciated.

It’s great to have this mission as a way to keep Freddi’s little light shining bright and to bring more hope for children living with mito, like Ronni. Any awareness or funds we can raise, will in turn raise hopes of treatments and a cure.

Raise hope for mitochondrial awareness

Ronni & Freddi's Mito Mission

Get involved and

support Ronni & Freddi’s cause.

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. Visit our Support Us page for inspiration!

Set up a fundraising page for Ronni & Freddi’s Mito Mission & donate here:

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