THE shocked parents of a youngster with a rare disease have received heartbreaking news after years of trying to get a diagnosis – but refuse to give up hope.

Stanley Newman, three, of Skelmersdale Road, Clacton, has a severe and incredibly rare form of congenital muscular dystrophy.

The muscle-wasting condition is gradually weakening him.

After two years of intensive tests, doctors have finally made an exact diagnosis of Stanley’s disease, which has revealed a heartbreaking prognosis.

Experts say most people with the condition die while they are still in their teens.

No sufferer has lived past the age of 30.

Stanley’s chances of turning 16 were rated between 50 and 60 per cent.

So far, everyone who has suffered from the condition has developed heart problems as they grow older, because the disease affects the heart muscles.

Stanley's dad Rob said: "I can’t describe how hard that was to hear.

“The doctor did stress things are moving on quickly and developments are constantly being made. What is fatal now may not be in 20 years.

“We have had a lot of shocks and setbacks, but that has only strengthened our resolve. We will do whatever we can to give Stanley a happy childhood.

“He has faced so many challenges – more in his three years than the rest of us probably ever will in our whole lives, and he has done it with a smile.

“It’s not easy, but we have to stay positive and we have to do whatever we can to keep moving forward. There is no other option.”

The family is raising cash for a home conversion to help make their house more accessible for Stanley.

They are also working hard to fundraise for Muscular Dystrophy UK for research into the condition.

People can find out more and support the cause at musculardystrophyuk.org/Stanleys-Heroes.