THE family of child with a rare genetic disease has joined forces with others to launch a new charity to fund important research into the condition.

Alfie Leggett was born with Norrie Disease, a rare genetic disorder which only affects boys.

The chances of children being born with the condition are 12 million-to-one.

The condition, which is known to affect only 25 families in the UK, causes blindness and hearing problems and can result in autism, slow development and seizures.

It has already caused Alfie, two, to lose his sight.

On Saturday, his parents, Tommy, 36, and Kelly, 31, of The Walk, in Eight Ash Green, launched the Norrie Disease Foundation at Great Ormond Street Hospital.

Tommy has been appointed as a foundation family liaison officer while Kelly is secretary of the charity.

The foundation is the only UK charity dedicated to the disease and will be guided by a high profile medical advisory board, which includes specialist clinicians and researchers from University College London and from Great Ormond Street.

One of the main aims of the charity is to promote research into genetic hearing loss which could have a life-changing effect on the development of the disease.

Dad-of-two Tommy, who has completed a number of high profile charity challenges to raise money for brave Alfie’s treatment, said: “When families find out that their child is affected by a rare life-changing disease their relationship with other parents can change.

“They suddenly realise they are no longer in the same boat as them and their emotions and experiences are so different.

“Many parents find themselves feeling very isolated.

“We want to make sure no parent feels alone and that they have access to all of the latest medical insight and research into the disease.”

The Leggetts, who are also parents to five-year-old Harrison, have joined forces with the family of eight-year-old Josh Horrobin, who was diagnosed with the condition at two weeks old.

Josh attends a mainstream school in Blackheath, London, but his hearing is deteriorating.

His parents are determined to do all they can to slow the disease’s progress.

Josh’s mum, Wendy Horrobin, who is foundation chair, said: “There wasn’t a Norrie disease network in the UK that I could reach out to for support and guidance when Josh was diagnosed which is why I decided to get in touch with other Norrie parents to set up the Norrie Disease Foundation.

“Raising awareness and educating the public about Norrie disease is a critical part of the work the NDF will do.

“We want to change the future for those affected by Norrie disease and believe that through the Medical Advisory Board, we can engage in new research across all aspects of the disease that will improve the lives of children and adults with Norrie disease worldwide.”

Prof Maria Bitner-Glindzicz, a clinical and molecular geneticist with a special interest in deafness, said: “Little has been known about the disease but thanks to funding from Newlife, for the first time ever, we now have an opportunity in the UK to conduct research into the loss of hearing.”

The charity was set up using cash raised by the national Jeans for Genes Day.

To volunteer, donate or find out more, go to norriedisease.org.uk.