Parents Sarah and Andrew, of Annesley Road, thought they would never have children after Andrew was forced to fight Leukaemia at just 19 and Sarah suffered endometriosis.
But their joy at becoming parents in 2005 was short-lived when at just two, the boys were diagnosed with autism and less than a year later realised their toddlers were having problems with their vision.
This led to further tests at London’s world famous Great Ormond Street Hospital and a devastating diagnosis of Batten Disease followed at the Queen’s Medical Centre in Nottingham.
“It was the worst news a parent could ever hear,” said Sarah, who had to give up work as a nurse at City Hospital when her boys’ health deteriorated. We could think of nothing more cruel.
“When we got the diagnosis, we were told it was fatal and that was just the hardest thing to come to terms with. We wished back then it could have been something else, something that at least had a chance of survival.
Advancements in the fight against Batten are now being made and research has helped scientists to understand the disease, which is the first step in finding therapies to help slow the disease down and ease the symptoms.
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.”
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.
Only now have the courageous couple stepped out of the shadows and found the strength and determination, with the support of a new-found friend, to reach out to the Hucknall community and appeal for help in their battle against Batten’s.
“For the past four years we have been living in what seems like a black hole and just trying to get through each day,” said Sarah. “It just seemed impossible to think about tomorrow as our focus has just been about caring today.”
It was finding out about the research carried out in 2008 on the particular strain that Freddie and Louie suffer with, that motivated them to try and help fund further research. A chance encounter with the scientist at a Batten Disease Family Association (BDFA) meeting followed and it was there that he told the pair that his lab was prepared to carry out the next stage of research but that the initial funding of £20,000 was not available.
This gave the couple hope and motivated them to take action and it was Andrew’s decision to run the London Marathon to boost fundraising that led to the meeting with Suzanne Jackson at the gym where he trained.
“I was asking people to put posters up and take sponsorship forms to their offices when a friend introduced me to Suzanne,” said Andrew. “Her business experience in marketing and her contacts has given us the support, knowledge and experience to launch this campaign. We are told £20,000 is a small sum for medical research,” added Andrew who also had to give up his second-hand furniture business to help Sarah care full-time for their boys, who are now eight. “But it will make a huge difference to the lives of those who suffer from this disease and it’s the price we have to pay to give our children, and others like them, hope for the future. We can’t imagine life without Freddie and Louie. This fundraising means everything to us.”
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 [email protected] 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.com/andrewdawkins.
To donate direct text ‘BDFA55 £amount and your name’ to 70070.
For more information go to www.battlebatten.com.