It was exactly a year ago that Sarah and Andrew Dawkins made a decision that was going to make a huge difference to their family’s lives and others when they vowed to Battle Batten.
Now the Annesley Road couple whose twin boys, Freddie and Louie suffer from a rare strain of the disease, are celebrating after raising enough money to start a research programme in the hope of finding a life-saving cure.
Still shell-shocked after realising they have not only reached their £50,000 target but surpassed it to the tune of £61,700, thanks to the Battle Batten Ball held on Saturday, Andrew and Sarah have vowed to continue with their fundraising mission.
With an original target of £20,000, set in February when they first made their story public, it was increased to £50,000 in the summer after they realised the level of community support they had could make them achieve so much more.
Now as the pair try and come to terms with their achievement, thay have said that despite their exhaustion, they hope to boost the fund even further.
“We never thought we would reach £20,000 when we started so to hit £50,000 is just incredible,” said Sarah who had to give up her job as a nurse to become a full-time carer for their boys. “We thought we could stop at this but so many people have said they want to do more for the charity that it would be wrong to give up now.
“You just can’t underestimate how kind and generous people are.”
All the money collected will go to pay for a research project specifically set up to investigate the strain of the progressive neuro-degenerative Batten Disease that Freddie and Louie have been diagnosed with through the BDFA (Batten Disease Family Association).
“The more money the better because there is so little financial support for Batten’s as it is such a rare condition and very few people have even heard of it that it needs all the help it can get.”
The fundraising efforts of the community and the family culminated in the ball event held at Papplewick’s Goosedale Centre.
The event attracted over 400 people and included a three course dinner, music from Nottingham Trent University Choir, comedian, casino and silent auction.
“We just can’t believe how the event just snowballed,” said Andrew. “We initially hoped for 150 people but then it just grew and grew with so many people wanting to come and support the charity.
“It was totally overwhelming to us both to see so many people come together and support our family.”
Nottingham’s Curry Lounge chef and patron, Arfan Razak, was the compere for the night but also offered a cook at home banquet in the silent auction which received an astonishing bid of £1,100.
“There was a fabulous atmosphere on the night with everyone enjoying themselves, which is what we wanted,” added Sarah. “We didn’t want it to be a solemn evening, despite the reason we were all there, but a celebration.”
Guests were shown a video highlighting the family’s story at the beginning of the night, which raised not only awareness of their particular plight but of Batten Disease as well.
“We had so many people during the ball and afterwards telling us how much they enjoyed it and congratulating us for what we had achieved,” added Andrew and Sarah who are naturally very shy and private people who have faced personal challenges to make their lives so public.
The ball alone raised a massive £19,700 from ticket sales, sponsorship, casino, auction and raffle.
“We are just both so gob-smacked with its success and so thankful for everyone’s generosity,” added Sarah as she looks at her partner of 18 years and tries to come to terms with their achievement. “But we couldn’t have done any of this without the huge support we have received from certain individuals as well as family, friends, neighbours, strangers, business owners and countless people from across the Hucknall, Bulwell and Mansfield communities.”
It was at the BDFA family conference in Novemeber 2013 that they first met a scientist who said they could start research if £20,000 was raised. A year later, the day after the ball, the family went along to the annual gathering and were applauded for their efforts after being the family who have raised the most money for the charity since it was set up 10 years ago.
This self-proclaimed ‘ordinary couple’ have done an extraordinary job that has challenged them both physically and mentally as they juggled caring for their demanding boys and leading the fundraising quest.
“We would never have believed we could have done it as we are just ordinary people from a former mining town,” explained Andrew. “We felt so proud at the conference and we hope we can inspire others because if we can do it anyone can.”