THE family of a youngster with a rare metabolic disease are hoping his beloved teddy bear will be whisked off on a tour of the country to raise money and awareness.

Five-year-old Harry Rolph-Wills of Grafton Road in Dovercourt has a rare form of Batten Disease which is only found in one or two children in the UK per year.

Harry’s illness causes epilepsy, loss of sight and problems with speech and mobility.

However his family are looking to raise money by sending Harry’s teddy bear Boris on a nationwide tour.

The idea is for Boris to be given a different home each night and whoever has him in their possession will be asked to donate to the Batten Disease Family Association.

They will then nominate a new temporary home for Boris, similar to the ALS icebucket challenge, which recently swept social media.

Mum Laura said although the whole family are devastated with the diagnosis they are hoping to raise as much money as possible.

“We were told on July 30 it was definitely Batten disease, although we knew it could have been that from April,” said Mrs Rolph-Wills.

“We wanted to turn the whole thing into a positive and raise money for the Batten Disease Family Association because, as the illness is so rare, they do not receive any funding for research to help find a cure.

“Although it is awful, there is no point in us moping around.”

To donate visit justgiving.com/Harrysheroesforbdfa or.facebook.com/harrysheroesforbdfa.