Hello, I’m Regan Nash. I am 10 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. 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. He’s got such a wicked personality – he will laugh at anything and is a complete inspiration to us.
Please do anything you can to help us raise awareness and hopes of a cure for mito.
The Nash Family