Hucknall twins Freddie and Louie Dawkins and their story has inspired the community to back their campaign and raise thousands to help them Battle Batten.
As the two boys celebrate their ninth birthday today, their parents Sarah and Andrew have launched their latest event to boost funds further to enable a research programme into the rare strain of the genetic disease to get underway.
The fighting fund now stands at £30,000, with every penny of the money raised being ring-fenced by the Batten Disease Family Association (BDFA) for research into CLN5 which the boys suffer from.
“Our original target was £20,000 to commission research,” said the twins’ mum Sarah. “The process to find a specialist researcher is in the final stages and we are well on our way to raising our year-end-target of £50,000.
“This means that further research can be continuous as time is not on our side.”
To boost the funding a Battle Batten Black, White and Blue Ball will take place on Saturday 8th November at Goosedale Banqueting Centre in Papplewick,
The ball will include music, dancing, comedy and a casino.
“We want the ball to be a celebration of Freddie and Louie and all the fundraising efforts of the people in our community over the past year,” said Sarah and Andrew.
“We would love as many people as possible to attend.”
Family friend, Suzy Jackson, has been supporting the couple throughout the campaign and is organising the black tie event.
“We have some great prizes coming in including a family treat to Disney on Ice at Christmas with overnight accommodation; a number of engaging lifestyle experiences; even a bottle of the new David Beckham Haig Club Whisky,” said Suzy.
The campaign is looking for corporate sponsors for the event and packages are still available. Tickets are £45 each or £400 for a table of 10.
“Tickets are selling fast as it’s most definitely the event to be seen at and to be supporting,” added Suzy.
From supermarket bag-packs to marathon running, cake bakes to 4x4 rallying, people of all ages have been supporting the campaign since it was launched in the Dispatch earlier this year and helping to raise funds.
“It’s staggering to think that within a matter of months our community has raised in excess of £30,000.
“We are on the final push and every penny raised from the ball will go towards helping to find that elusive cure that is so badly needed to end the heartbreak.”