The parents of Hucknall twins Freddie and Louie Dawkins hope a funding campaign can restart research into their ultra-rare condition.
CLN5, the strain of Batten Disease that Freddie and Louie have is very rare. This means there has been very little research into it and there is currently no cure.
However their parents, Sarah and Andrew, of Annesley Road, came across some research dating back to 2008. Frustratingly, this had not continued due to a lack of funds.
“Up until 2013, there was just no hope,” explained Sarah. “It was just a waiting game, waiting for their first seizure and for them not being able to walk.
“We uncovered the work of a scientist who completed some research in 2008 to further understand the disease and he discovered that
CLN5 works the opposite way round to other forms of the disease which is a massive step forward in finding the right treatments.”
While there has been successful work in exploring treatments for other strains of the disease, there has been little more done for CLN5.
“After speaking to the scientist, he suggested further computerised research was required but it would cost £20,000 to get it up and running for which there is no funding.”
The Batten Disease Family Association (BDFA) is a registered national charity which aims to support families, raise awareness and facilitate research.
“We have set up a system through the BDFA that ensures the funding we raise will go directly towards this research which, if successful, could lead to finding the right therapies to slow down the disease or reduce the severity of the symptoms,” explained Sarah.
“The research into Batten will also help the understanding of other neurodegenerative conditions like Alzheimer’s and Parkinson’s, for which only palliative treatments exist so far.”
Join the fight for the future of Freddie, Louie and others by funding further research.
How you can help:
If you would like to hold a fundraising event for ‘Battle Batten with Freddie and Louie’ and would like it featured in the Dispatch, contact firstname.lastname@example.org or call the newsdesk on 01623 450308.
To contact the family direct to offer help with business sponsorship, fundraising or raffle prizes call 07866 971853 and leave a message and Sarah or Andrew will return your call.
To sponsor Andrew’s London Marathon event visit: www.justgiving/andrew Dawkins.
To donate direct text ‘BDFA55 £amount and your name’ to 70070.
For more information go to Facebook and Battle Batten Freddie and Louie.
MORE ON THIS STORY: HELP US FIND A CURE