'I lost my mum and brothers to a genetic disease'

A Surrey man is hoping to raise awareness of a rare mitochondrial condition which led to the death of his mum and two brothers.

George O'Neill lost three of his closest family members to Melas syndrome - a maternally inherited disease which can present with symptoms including stroke-like episodes, seizures, muscle weakness, hearing loss and fatigue.

The 27-year-old, from Ash, is now going through the process of testing for the condition to see how severely it will affect him.

He hopes by sharing his story he will promote understanding of the impact of mitochondrial conditions and encourage others to get tested too.

Melas (mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes) syndrome is a form of mitochondrial disease.

Mitochondrial disease is where a person is born with a genetic fault causing an inability to produce enough energy from the mitochondria present in cells.

A spokesperson from the Lily Foundation charity said mitochondrial disease affects about one in 4,300 people.

Melas is usually passed down through families, but not everyone will develop symptoms, and those with them can have symptoms varied in type and severity.

"There aren't enough words to put it into play," George told the BBC. "It's horrible, horrific.

Something you never, ever expect as a 16/17 year old boy - losing that sort of family instantly."

After years of suffering with seizures and stroke-like episodes, George's eldest brother, Mark, died in 2015 from what they later found out was Melas syndrome.

George's mother soon faced the same prognosis. About eight months later, she died.

Six years later, George returned from a family holiday to find out that his brother, Liam, had also died from Melas syndrome.

George told the BBC he initially did not know the disease was hereditary.

"I now know that I have a form of it - I don't know which form.

"I think looking future wise, I've got a very beautiful partner who I'm building a future with, so I need to get this outlined," he said.

"I need to find out how it's going to affect me - or if it's going to affect me."

There is no cure for Melas syndrome, but detection can help to manage symptoms if they appear.

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