2021 Winner
Mike and Lucy Carroll
Parents have spent five years battling on behalf of their two sick children, as well as raising money to help others facing the same plight.
WHEN two of their children were diagnosed with a devastating degenerative condition, Lucy and Mike Carroll could quite understandably have crumbled.
Instead, the couple have spent the last six years battling to secure life-changing treatment not just for their own kids, Ollie, ten, and Amelia, eight, but all families facing the same plight.
Their efforts to raise money and widen access to drug trials to counter the effects of rare neurodegenerative condition Batten Disease have been recognised with a Special Recognition award.
Lucy, 36, said: “We’d like to dedicate this award to Ollie and Amelia, and all the children who are battling all types of Batten Disease. They are true warriors and their fight is incredible. They deserve this – not us.”
Ollie was two when his parents noticed he had a speech delay and the active little boy was becoming increasingly clumsy.
They were told not to worry but after he started to suffer seizures, he was diagnosed with Batten Disease, an incurable, life-limiting condition which robs children of their speech, mobility, eyesight and ability to swallow.
As if the news wasn’t devastating enough, the Carrolls were also told his little sister Amelia had it too.
Thankfully their three other children – Danny, 14, Micky, 12, and Renesmee, 17 months – do not, but could be carriers of the gene that causes it.
Lucy said: “Our immediate reaction was to run away and we took the kids to Peppa Pig World for some peace and family time.
“But Ollie suffered a seizure at the top of a slide, followed by another 14 back-to-back, and we had to take him to hospital in a strange place. It was hell.
“Batten Disease was new to us then and the doctors we encountered knew little about it. We realised we had to do everything we could to raise awareness and fight for all the families.”
For almost two years, Mike, 37, and Lucy, from Poynton, fought and eventually won widened access to ground-breaking treatment at Great Ormond Street Hospital.
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 sadly he cannot now walk or talk, and is blind. But Amelia became one of the youngest children in the UK to receive the therapy.
Lucy said: “It’s been bittersweet because we knew of children who passed away while we were fighting and Ollie lost his sight in that time. But there was another boy diagnosed last week who will benefit from it.
“We can see the difference it has made to Ollie and Amelia’s quality of life. By age six, children with their CNL2 strain of Batten Disease are usually completely dependent on others for their care needs.
“But Amelia attends mainstream school, she is still able to walk and talk, and has only ever had one seizure.”
The couple are now campaigning to have the treatment made available at Manchester Children’s Hospital and have an active group of supporters behind them called Ollie’s Army.
They are also trying to raise £250,000 for medics at Great Ormond Street to start a new clinical ‘compassionate use’ programme to help save the eyesight of patients including Amelia, which they hope will start in the coming weeks.
Mike said: “They’ve done trials on animals and the data is absolutely fantastic, but the drug company won’t fund a trial on humans, nor will the NHS.
“We need to cover the costs because without this treatment, Amelia will lose her eyesight and it is a race against time. She is deteriorating every day and we’ve already gone through Ollie losing his sight, which was devastating.”
The family, who have spent most of the last 15 months shielding other than fortnightly trips to Great Ormond Street, were surprised in their garden with the award by actress and Ollie’s Army supporter Sue Johnston.
Britain’s Got Talent judge Amanda Holden also sent them a special message of congratulations.
Lucy said: “We are so proud to be able to do this in Ollie and Amelia’s name, and to see Batten Disease gain wider recognition.
“But none of this would have happened without our Ollie’s Army of supporters and fundraisers. We can’t thank them enough.”
To donate to the appeal go to https://gofund.me/1b09b421