THE FAMILY of a Cradley Heath boy who suffers from mitochondrial disease have welcomed a storyline in Coronation Street which is raising awareness of the rare condition.
Regan Nash has mitochondrial disease MTT1 - his strain of the degenerative condition is so rare that he is one of only two people in the world to suffer from it.
The 11-year-old's family have spent more than three months at their home in Norwood Avenue during lockdown to shield him from coronavirus.
They have not left it during all that time.
They praised the soap for running a storyline in which Steve McDonald (Simon Gregson) and Leanne Tilsley (Jane Danson) have a diagnosis of mitochondrial disease for their child Oliver.
The most high profile case of the disease in the UK has been Charlie Gard, who sadly died aged 11 months.
You can read more about Regan and donate to help the family at his website here.
Regan's mum Melanie Morris, aged 30, said: "We have been trying for years to raise awareness of Mitochondrial Disease - so it's great that Coronation Street is helping spread the message.
"It's very emotional and I cry every time I watch an episode.
"It's a storyline on TV - but it's real life for us and we are living it every day.
"The more awareness we can raise - the more money we can get towards one day getting a cure.
"The Lily Foundation is a charity which does brilliant work in providing support for families."
Regan has been enjoying lockdown life with step-dad Craig Lowe, aged 32 and siblings Kai Nash aged seven and Laci Lowe, aged six, who attend Timbertree Academy, but at times it has been hard.
Melanie said: "We've been in for more than three and a half months - we had to take the children out of school a week early to shield Regan.
"Luckily we get an Asda delivery every week as we were selected by the government.
"We want to make all Regan's time as good as it can be and he loves going to Sandwell Valley, but obviously we can't go.
"If people keep breaching the rules it means people like us have to stay in for longer.
"I'm scared to go out now and see other humans - I suffer from anxiety anyway from dealing with Regan's condition."
Melanie runs the Facebook site Regan's Fight for life with Mitochondrial Disease - where nearly 2,000 followers see regular updates into how the brave youngster is doing.
Regan, who was given just nine months to live at birth by doctors, was only given his official diagnosis aged nine.
Melanie said Regan is 98 per cent affected by the genetic condition, which has taken over almost all of his brain. He has 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.
The Lily Foundation is the UK's leading charity dedicated to fighting Mitochondrial Disease. It has been backed by comedian Peter Kay who has raised £34k for it.
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