Amelia Carroll, eight, and her older brother Ollie, 10, from Poynton, Cheshire, were diagnosed with the neurodegenerative condition Batten Disease in 2015.
Batten is a rare, incurable and fatal disease with a life expectancy of six to twelve years. Over time, the disease robs children of their speech, mobility, eyesight and ability to swallow, whilst causing uncontrollable seizures and movement disorders.
Eventually, children with Batten disease become blind, tube fed, completely dependent on others for all their needs, and unable to communicate.
Parents Mike and Lucy Caroll have spent five years battling on behalf of their two sick children, as well as raising money to help others facing the same plight – and recently received a Special Recognition Award at the Pride of Manchester Awards for their efforts.
When Ollie was three-and-a-half years old, in the bath, he had a seizure. When they arrived at the hospital, a neurologist told them Ollie had Batten Disease, and only had a few years to live.
“I’ll never forget seeing Ollie sat on his dad’s knee, wiping the tears from his own dad’s cheeks,” said Lucy in a video interview recorded for the Pride of Manchester Awards.
Then, they got the devastating news that their daughter Amelia, who is now eight, also had Batten Disease.
“Hearing it the second time was even worse than the first time, because we’d done the research and we knew what the disease was,” said Lucy.
For almost two years Mike and Lucy, from Poynton, fought and eventually won access to ground-breaking treatment at Great Ormond Street Hospital, funded by a pharmaceutical company.
The treatment, which replaces enzymes missing from the brain of a child with Batten Disease, consists of four hour-long infusions, twice monthly.
Ollie’s condition deteriorated during the fight for the treatment, and he cannot now walk or talk and is blind.
Amelia became one of the youngest children in the UK to receive the therapy.
The couple are now campaigning to have the treatment made available at Manchester Children’s Hospital.
Other Batten families got behind them, and Ollie’s Army and the Batten community managed to raise £250,000 for medics at Great Ormond Street to start a new clinical trial to help save the eyesight of patients, including Amelia – but they now need to raise funds for Amelia to get to London to access the treatment.
“When you look at Amelia now, who started the treatment, she can still walk and talk and eat,” said Mike in the video interview.
“But the one thing the treatment doesn’t do is it doesn’t save the eyesight.”
Lucy describes watching Ollie’s deterioration as “absolutely horrendous”, and now “to know that he can no longer see, that his world is dark… it’s awful.”
There is now a new drug available which will help children with their sight, and Mike and Lucy along with the Batten community are fighting for other children to have this.
“We basically set up Ollie’s Army to help keep family and friends informed about what was going on with Ollie and Amelia,” said Lucy.
“But now we’ve been able to use Ollie’s Army for fundraising and awareness, and obviously at the moment we are fighting to save Amelia’s eyesight and other children with Batten Disease.”
In May, the couple were surprised to see Sue Johnston OBE arrive in their back garden to present them with the award.
“We were in total shock to win this award but it was an honour to receive and be a part of such a special day and be given the opportunity to raise even more awareness of this ultra rare disease,” said the couple.
“If we can get this treatment started, it could save other children’s eyesight, and give them a better quality of life.”