Fundraisers helping the Battle Batten Campaign

Andrew Dawkins and Sarah Finney whose sons, Freddie and Louie, are believed to be the only identical twins in the world to suffer from the rare progressive neurodegenerative condition called Batten Disease.

And in a bid to fund research into their particular strain of the disease, started the campaign in their name calling on the Dispatch community for their help.

Now just three months in and the couple, together with support from friends and family and fundraisers from far and wide, have managed to secure the money needed to get the research study up and running.

Now the Annesley Road couple hope to maintain the momentum and have increased their target to £50,000 to enable the initial research programme to be extended in the hope of finding a cure for this devastating condition.

“We can’t believe we have managed to reach the £20,000 target so quickly,” said Sarah. “People have been so generous in helping the campaign and sponsoring fundraisers, buying raffle tickets or holding events in support of the campaign. It’s been brilliant.

“We just didn’t realise back in March at the start how big it was going to get,” added Andrew. “We are getting phone calls from people who don’t even know us who are willing to do allsorts of things to raise money. We have been overwhelmed.

“But now we want to continue and see how far we can go as obviously the more money we can get together the further the research can go.”

The nature of Batten Disease means it has some similiarities to other neurodegenerative conditions like Parkinson’s and Alzheimer’s so any research could help these conditions too.

The campaign organisers are now continuing to highlight the cause with a fundraising ball to be held at the Goosedale Conference and Banqueting Suite near Papplewick on 8th November.

“The campaign has become a large part of our daily lives as we try and co-ordinate everything, which can be difficult,” explained Sarah. “But we only have to look at Freddie and Louie to remind us why we are doing it. After spending so long in the shadows, it has given us both a focus and confidence to Battle Batten.”