Hello, Im Regan Nash. I am 10 years old and live in Cradley Heath in the 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, Regans Mum tells the familys 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 mitochondrias own DNA which is 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 Regans cells carry the faulty DNA. It has caused severe development delay, twisted legs, balance problems, 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. Its all the more difficult to cope with because theres so little understanding and very limited support. Thats something we want to help change.
Despite everything he has to go through Regan never stops smiling. Hes 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. Thank you.