Ezra's story shows that even with mitochondrial disease in the family, a diagnosis is not always straight forward and how mito can impact differently across generations.
Ezra was always a happy baby. Born in December 2023, he was heathy and normal up until he was around 7 months old, when he had a bad case of bronchitis. The illness really took it out of him, and he had to be put on steroids to slowly begin to treat him.
He sadly still wasn’t himself, then just as he started to recover, he caught croup. He would no longer sleep on his front, stopped rolling over, and he had been starting to crawl, but this stopped too.
There were also a few instances where he went vacant and his body began to shake, but aside from one time, these were all only for a couple of seconds. When this lasted a couple of minutes…
It was attributed to infantile shudder syndrome, and he seems now to have grown out of it.
We didn’t think too much of it and attributed all the symptoms to illness, but we mentioned this to our health visitor who said he could just be a late developer. He was never a big crier, but by now he had stopped crying completely. Many said to us, ‘Maybe he’s just a content baby.’
A couple of months later, we moved house and were allocated a new health visitor who was much more concerned about Ezra not hitting his milestones. They referred him to a higher-level healthcare professional who arranged physio and activities for him to try.
Near his first birthday, we took him in for his vaccinations. He didn’t cry or even flinch at these. The nurse who administered them said she hadn’t seen a baby who didn’t cry when they got injections in the 20 years she had been working.
We were worried that we’d somehow passed our anxieties down onto him and realised something wasn’t right at all. The paediatrician asked us to come in and mentioned they had always been concerned about Ezra’s head size being too big and continuing to grow. He also kept tilting his head to one side, which they said could be torticollis.
He went in for an urgent MRI, and we had to wait 3-4 weeks for the results.
He had lots of invasive blood tests.
When they asked about our family history, I explained that my mum had adult-onset Leigh’s syndrome. We were sent to the clinic in Newcastle, where they were very informative. It was an intense experience, but we started to understand more about what was happening to Ezra.
When my mum was diagnosed about four or five years ago, we were offered testing, but I said no because I hadn’t realised how serious it was. My sister got tested and it was found that she was a carrier but asymptomatic.
Ezra is now tube-fed and taking certain vitamins have helped him to start pulling himself up again and gain some strength. He laughs a lot at The Teletubbies and Mr Tumble, and he loves sensory equipment like feathers and foil blankets. He also weirdly loves holding pieces of cardboard!
…because we feel like we always have to repeat ourselves, even telling people the most basic facts about mitochondrial disease.
We would love to get some people together and do some charity fundraising days, if we can.
Any funds raised by Ezra’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 Ezra’s Mito Mission leaflets – there are so many ways in which you can get involved.
If you’d simply like to donate to Ezra’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
