A FUNDRAISER set up for an Accrington boy suffering from an incurable neurogenerative disorder has passed £5,000 in donations.

Jeffrey Charlesworth, four, is one of just five UK children to be diagnosed with the rare CLN2 Battens Disease each year.

The illness is an incurable, neurodegenerative disorder initially flagged up by his suffering of seizures in early 2020.

The boy's auntie, Louise, said: “Jeffrey is a brave, determined, loving, happy, energetic little boy who loves nothing more than playing with his trains and dancing to The Wiggles!

“On May 6, he was diagnosed with the rare CLN2 Late Infantile Battens Disease, an incurable life limiting neurodegenerative disorder with a life expectancy of just 6 to 12 years.

“It first presented itself about 18 months ago as seizures and speech regression and doctors thought he was suffering from epilepsy. He’ll need full-time care by the age of six.”

However, there is a chance that Jeffrey will be eligible for symptom management surgery soon, which would mean a trip to Great Ormond Street Hospital in London for an assessment and scans.

If eligible, the “footy mad” youngster will undergo a complex operation that will see a shunt fitted beneath his skull that will have the drug brineura infused into it every two weeks, which can help slow down the onset of disability.

This means that Jeffrey will need to travel to London every two weeks for the rest of his life.

Funds raised by the family's online appeal will help pay for the cost of this, as well as the many adaptations that will need to be carried out to the family home.

Miss Lawson said: “Children suffering with this disease eventually require specialist treatment in all aspects of their lives and suitable housing will also need to be sourced to allow to him to have a better quality of life.

“Any new home will need to be adapted to his needs; a wet room installing, specialist flooring, doorways and hallways widening and more.

“We are seeking donations to help give Jeffrey the best possible life, give the family some special experiences and time together and help with the financial impact of attending appointments, providing care and getting anything else he may need.”

Visit the GoFundMe website and search for Louise Lawson’s appeal, ‘Jeffreys Battle With Battens Disease’.