Based in West Midlands
Hello, I’m Regan Nash. I am 11 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!
Melanie Morris, Regan’s Mum tells the family’s journey with mito:
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.
Unfortunately, 98% of Regan's cells
carry the faulty DNA, making the impact severe.
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.
Despite everything he has to go through
Regan never stops smiling.
For Regan to have
a normal life and future.
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.
Just a little support for their mission
would mean such a lot.
The family’s main focus is keeping Regan as well and as happy as
possible – and making memories.
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.
Regan's Mito Mission
Get involved and
support Regan’s cause.
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. Visit our Support Us page for inspiration!
Set up a fundraising page for Regan’s Mito Mission & donate here:
Or follow and share Regan’s Story on social media