Mitochondrial Disease Case Study | Regan

Regan's

Story.

Hello, I’m 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, Regan’s Mum tells the family’s journey with mitochondrial disease …

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 variant of mito.

Because this form of mito comes from the mitochondria’s 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 Regan’s cells carry the faulty DNA and drastically impair his energy production. 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. It’s all the more difficult to cope with because of the lack of understanding people have about the condition and the limited support. I’m also scared about whether my younger children are going to be affected too.

Despite everything Regan has to go through, he never stops smiling. He’s got such a wicked personality – he will laugh at anything and is a complete inspiration to us.

As a family we want to do as much as we can to raise awareness and funds for vital research so that we can have greater hope for a cure in time for Regan. That’s why we decided to have our own Mito Mission in 2019.