Incredibly sadly, Regan died on 7th February 2022. His mission goes on as a tribute and legacy for a courageous and inspirational young man.
Hello, I’m Regan. I am 13 years old and live in Cradley Heath, West Midlands with my mum, stepdad, brother Kai and sister Laci.
I want to be 18, drive an orange car and feed a panda
– because I love pandas!
Regan was premature and had some health problems from birth. As he got older his health grew progressively worse. In 2018 Regan had a muscle biopsy test which showed that he has MTT1 – a rare form of Leigh Syndrome, which is a mitochondrial disease.
Because this form of mito comes from the mitochondria’s own DNA carried maternally, I was tested too along with my other children. We were also found to have it, but in a less severe form.
It has caused severe development delay, twisted legs, balance issues, very weak muscles, spasms and cramps, speech problems, epilepsy and autism. He uses a wheelchair, his right side is losing all mobility and the condition is now attacking his eyesight.
We’re watching Regan die slowly. I suffer from terrible anxiety as I’m scared of losing my child. There’s no cure, he’s just on medication to make him as comfortable as he can be for the time he has with us. It’s all the more difficult to cope with because there’s so little understanding and very limited support. That’s something we want to help change.
Having a poorly child is never easy. If they have a little-known illness and poor prognosis it’s even harder. Add to that your other children having the chance of being impacted too – and you start to get an insight into how much Regan and his family want to be a part of raising hopes of treatments and a cure for mito.
Mel and Craig and grandparents Kerry and Gary plan to raise awareness and funds to the extent they’re able. This is of course limited by their absolute priority of ensuring that Regan, Kai and Laci are taken care of, including all the medical needs that this involves.
Other people’s kindness in helping out with their mission will go such a long way in taking it forward … and in helping Regan’s family to feel hopeful and supported.
Whether you support Regan’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 Regan’s Mito Mission leaflets – there are so many ways in which you can get involved.
If you’d simply like to donate to Regan’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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Other ways you can support us
Visit our Support Us page for more inspiration!
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contact@mymitomission.uk | 0300 102 1112
My Mito Mission is a Charity Registered in England & Wales No. 1212268 at c/o Project Colt, Bridgefield Mills, Elland HX5 0SQ
