People of all ages are coming together across the Dispatch district to support the Battle Batten Campaign with Freddie and Louie.
Children and adults, groups, schools and individuals are pledging their help in raising money for the appeal to raise £20,000 towards vital research into Batten Disease.
Eight year old boys, Freddie and Louie Dawkins are believed to be the only identical twins in the world with this disease for which there is currently no cure.
The sons, of Andrew and Sarah of Annesley Road, Hucknall, were diagnosed with the rare genetic condition four years ago. This life-limiting illness has rendered both boys blind and autistic.
But since their parents have found the strength to open their lives to the community and tell their story, they have been overwhelmed with support and offers of help.
“It has been quite phenomenal the response we have received,” said mum, Sarah, who is a trained nurse who had to give up her job to become a full-time carer with their dad, Andrew.
“People have heard our story through a friend of a friend and offered to fundraise even though they don’t know us directly. It is amazing.
“They want to help make a difference by boosting the appeal so the research can go-ahead.”
“Although there is no cure at present we are fighting to get a research programme into the condition developed through the BDFA (Batten Disease Family Association),” explained Sarah. “All the money we are raising will go into research in the name of Freddie and Louie.”
A young relative has also joined the campaign.
Nine year-old Hillside Primary School’s Callum Smoczyk, is taking part in a sponsored swim event .
Callum is pushing himself to swim 1,000m on 15th May at Hucknall Leisure Centre despite only having achieved his 800mbadge to date.
“He loves swimming and has used it to get fit after a hernia operation,” added Sarah. “We are delighted he is challenging himself for Freddie and Louie.”
The family have also been given a boost with tickets to Hucknall’s Fake Festival event taking place on 31st May.
“I heard the boys really enjoyed the music last year so wanted to give them a chance to have fun again at this year’s event,” said organiser Stuart Mather. “And I hope to have collection tins during the event to fundraise and support the Battle Batten Campaign further.”