Momentum is growing since the Dispatch launched the Battle Batten Campaign with Freddie and Louie last week.
The appeal is to help raise £20,000 to fund vital research into this devastating diseasewhich Hucknall brothers Freddie and Louie Dawkins suffer with.
The boys, who live on Annesley Road with parents Andrew and Sarah, are thought to be the only identical twins in the world with Batten Disease for which there is currently no cure.
The couple’s happiness at becoming parents, against the odds, turned to heartbreak when in 2005, aged just two, the boys were diagnosed with autism and less than a year later the diagnosis of Batten Disease.
“It was the worst news a parent could ever hear,” said Sarah, who was working as a nurse at the time.“We could think of nothing more cruel.”
Batten Disease is a very rare genetic life-limiting neurodegenerative condition that affects 1:30,000 births.
Children are born apparently healthy but soon show developmental problems, lose their sight, speech and mobility before dying between six months and 30 years.
But because there are several strains of the disease and very few sufferers, there is very little funding to help find a cure.
“We live in the hope a cure can be found in time and that’s why we are battling Batten.”
It is only in recent weeks that the family, through support of a friend, have called upon the Hucknall community for help.
It follows four very difficult years as the twins and their parents tried to cope and adapt to life since the diagnosis.
“The boys have shown huge resilience to cope with their blindness and we are able, as a family, to come out of what has seemed like a never-ending black tunnel,” said Sarah.
“Freddie and Louie are now eating well, smiling, interacting and loving their music which acts as a great therapy for them both.
“They are now also going to school each day at Fountaindale which gives us both a little time to catch our breath and the strength to start the campaign.”
They have launched the appeal across the media, through social networking sites, distributed leaflets across the Dispatch district and directly appealed to community groups for their support.
Sarah and Andrew are now committed to reach their target to enable this vital research to go-ahead.
The couple spoke about the campaign at the recent I Love Hucknall group meeting to raise awareness of the appeal.
“As a group we want to help and support the family as much as we can,” said chairman, Chris Williams. “We have agreed to distribute the leaflets amongst the town’s traders and Mark Allison at The Sweet Cafe has put a collection tin on his counter.”
As word has spread, businesses across the area have stepped up to offer financial backing too.
Hucknall-based Wood Lane Timber Merchants have given £500 and East Midlands Carpets added £100 with many more pledges made.
And High Street bar H2O will be holding a fundraising event on St George’s Day, 23rd April at 8pm. There will be live music from Phil Rostance and the Marshall Band with special guests. Tickets are £5 each with all proceeds going to Battle Batten.
“We have agreed with the Batten Disease Family Association (BDFA) that all monies raised will go directly into research,” added Andrew.
“We live in the hope a cure can be found in time, that’s why we are battling Batten and we hope you will too.”