The family of a boy battling a rare brain disease have launched an appeal for him to undergo life-changing treatment in Poland.
Marcus Allen, 12, was diagnosed with a form of Parkinson's Disease called Aromatic Amino Acid Decarboxylase Deficiency(AADC) when he was just six months old.
Marcus, from Romiley, is one of only 130 children in the world with AADC, a genetically inherited neurological and muscular disorder that impacts on almost every aspect his life.
He cannot speak, walk or sit up unaided. The youngster also relies on a feeding tube and suffers with seizures known as oculogyric crisis’ where his eyes roll back and his body goes stiff.
Marcus' family are hoping to raise £70,000 for a pioneering form of gene therapy to improve his quality of life.
Read more of today's top stories
The treatment is being offered in a hospital in Poland but because it is still being trialled, the NHS won't cover the costs.
However, Marcus' consultant at Great Ormond Street Hospital is said to be advocating the treatment.
Diane Allen, Marcus' mum, said: "It has been a long and difficult journey.
"The gene therapy works by replacing an enzyme in the brain.
"It would give him a better motor function, free him of pain and enable him to live medication-free.
"We're hoping this would help unlock him from this disease. At the moment he wants to move but he can't.
"Marcus will have an ocular crisis about once a week.
"When that happens his eyes roll back and he becomes very stiff.
"It can last up to an hour and when he does come down it can take a day for him to recover.
"At the moment Marcus is trapped inside his body and this new treatment has given us all hope."
Despite Marcus' physical difficulties he does have cognitive awareness, and loves being around his brothers, Noah, eight, and Jacob, two.
He loves going to Heaton School in Stockport, going out in his wheelchair and listening to Smooth Radio.
"He loves the radio," says Diane.
"That's his comfort zone. It makes us all chuckle."
A JustGiving page launched by the family has so far raised more than £35,000.
Get breaking news first on the free Manchester Evening News app - download it here for your Apple or Android device. You can also get a round-up of the biggest stories sent direct to your inbox every day with the MEN email newsletter - subscribe here. And you can follow us on Facebook here.
