Teddy bear tour to raise awareness of devastating child disease

A campaign to raise funds and awareness of a devastating and heartbreaking disease is to come to Orkney’s shores this weekend.

Jeffrey Charlesworth, aged five, from Lancashire, was diagnosed with the rare CLN2 Batten’s Disease in May this year.

The incurable neurodegenerative disease affects an estimated 30 to 50 children in the UK, and five to six children are diagnosed each year.

Children diagnosed have a life expectancy of six to 12 years and, in Jeffrey’s case, the disease first presented itself as seizures at about 18 months.

The disease will mean that Jeffrey will soon start to lose his sight, speech, control of his body, and the ability to chew and eat. It will cause dementia, he will need a feeding tube fitted, and he will ultimately pass away.

As part of efforts to raise funds to assist Jeffrey’s stricken family, and to boost awareness of the brutal illness, a teddy mascot, Jeffrey DaBear, is being carried around Britain by motorcyclists.

Money is being raised along the route, and each rider carrying Jeffrey the mascot is to try and get as many local riders as possible to join them on their leg.

Jacob Foster and Lucy Leech, from Stromness, have been organising the Orkney leg of the tour.

They both became inspired to help after following Jeffrey’s plight on social media.

Jeffrey DaBear will be arriving in Stromness on Sunday, September 26, and from the town’s ferry terminal will then make its way to the Stromness Community Centre.

There, a coffee afternoon — Jeffrey’s Coffee Extravaganza — is to take place between 12 noon and 3pm.

From the community centre, the bear will make its way to St Magnus Cathedral.

Mr Foster’s father John, of Orkney Trike Tours, will also travel with the bear.

Mr Foster said: “We would like to invite the public to capture this by taking photos of Jeffrey DaBear arriving in Orkney, the coffee afternoon, a group photo outside the community centre and a photo at the cathedral.

“The coffee afternoon will be free for you to enter. We hope to raise as much awareness and funds as possible.”