Reiff: 21/09/2022 - 21/04/2025
Reiff's story shows how a prognosis can be so devastatingly short when mitochondrial disease symptoms appear at an early age. His legacy continues through his mission and is run by Reiff's loving family.
After a relatively straightforward birth, Reiff lived the first 15 months of his life as a normal, healthy baby. He enjoyed playing with his older brother and chatting away to everyone he met.
On 8th April 2024, everything changed when he had his first seizure. It was the worst moment of my life. I didn’t know what was happening and it was horrible.
He was quickly rushed into A&E, but the complexity of Reiff’s situation and a lack of knowledge of how to treat it made everything difficult.
From when we left the hospital for the first time in June 2024, Reiff was peg fed as he had no swallow. They started him with a nasogastric tube but he always pulled it out, so it was changed to a peg.
For five weeks we had no idea what was wrong with him; he had so many tests done, including lumbar punctures, and then they asked to try genetic testing which resulted in us finding out that he had mitochondrial disease. It was a shock to the system.
Doctors didn’t know what to do with him. It’s not that they didn’t want to help us, they just had no clue. It was a lot for GPs to understand – some of them had never even heard of it.
Then, the seizures stopped. He was doing amazing, even trying to crawl again. For an entire year, Reiff went without any seizures or symptoms.
We had such an amazing year together. We went to Butlins, which he loved, and got out and about with his big brother, nana and grandad all the time.
Tragically, another seizure happened around a year after the first, but this time it changed him significantly.
The day before he had his last seizure, he was standing up and it was amazing.
Incredibly sadly, our beautiful, loving, ‘star boy’ Reiff passed away in April 2025 aged just 2 years old.
We’re comforted by the fact that he had the most amazing two years full of love and laughter. He was such a loving boy, always smiling and chatting away. I miss him so much and everyday hurts being here without him, but I’m also glad he’s finally out of pain. I just wish we got more time to make memories.
The care we received from healthcare workers at Queen’s Medical Centre was amazing. In his final days they went above and beyond for us and did things I didn’t think nurses could do. I was in contact with the wards and his consultant, who always advised me whenever I needed it within the same day, which was truly amazing of them!
…by raising awareness of mitochondrial disease.
…which could result in earlier diagnosis and better care throughout.
Any funds raised by Reiff’s mission goes to My Mito Mission’s
central funds to be granted towards research and support projects
to benefit everyone affected by mito.
Spreading the word, following, sharing, as well as donating and raising funds are all really helpful and valued. From running a race to holding a bake sale, hosting a collecting can to giving out Reiff’s Mito Mission leaflets – there are so many ways in which you can get involved.
If you’d simply like to donate to Reiff’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!
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contact@mymitomission.uk | 0300 102 1112
My Mito Mission is a Charity Registered in England & Wales No. 1176616 at c/o KT Hydraulics, Gannex Park, Dewsbury Road, Elland HX5 9AF
