Cheshire siblings fight to continue treatment heads to Parliament
Ollie and Amelia Carroll have Batten Disease.
Last updated 12th Mar 2025
The parents of two children from Poynton who have an incurable neurodegenerative condition known as CLN2 Batten Disease are heading to Parliament today (Wednesday 12th March) to raise awareness of the vital treatment that is currently prolonging their lives.
Ollie, 14, and Amelia Carroll, 12, are among 36 children in the UK receiving an enzyme therapy drug – which slows down the progress of the disease.
The treatment began in 2019 based on a five-year agreement, whilst the NHS collected long term data on how effective it was.
That agreement was extended until May 2025 and now commercial discussions are taking place between NHS England and the pharmaceutical company behind it.
"No parent should ever be put in this position, having to argue that your child's life is worth a price tag of treatment," says Ollie and Amelia's father Mike.
"If they hadn't been receiving this treatment there's no doubt about it they wouldn't be here today.
"But instead, they're here, they're strong and they're happy, with a great quality of life.
"Ollie still goes swimming, he still communicates with us, he's a very smiley boy and loves being with his siblings.
"Amelia has just celebrated her 12th birthday, she still goes to school, she's still communicating with us, she's still eating orally. If they hadn't had this treatment over the years both of them would have been suffering seizures, movement disorder, pain, but they're not, they're both doing great and that's purely down to the enzyme replacement therapy".
Who is making the decision on the treatment for CLN2 Batten Disease?
The decision on whether to continue funding the drug is now with NHS England, which is currently in commercial discussions with the US pharmaceutical company which makes the drug.
A NICE spokesperson said: “Since 2019, Brineura has been provided for eligible NHS patients under a Managed Access Agreement. With the support of NICE, NHS England and BioMarin have agreed a 6-month extension of the current agreement. This will now run until 27 May 2025.
"All parties will now use the extension period to try to reach an agreement that secures permanent access for current patients and allows new patients to start treatment. During this period, newly diagnosed patients can be assessed for treatment eligibility and start treatment under the terms of the current agreement.
"There are currently no arrangements to enable access to Brineura as part of standard NHS care following the expiry of the agreement. As part of the ongoing NICE evaluation the next steps will aim to enable commercial discussions between NHS England and BioMarin to progress further and will not affect continuation of treatment under the now extended agreement.
"Discussions between NICE, NHS England and BioMarin so far have been constructive, leading to the agreement of the 6-month extension and the agreement to hold a third committee meeting on Thursday 3 April at which additional information provided by BioMarin will be the focus of the committee's discussion and consideration."
Today's event
Mike and his wife Lucy are heading to Parliament with a number of other families to raise awareness and speak to MPs.
A drop-in event has been set up by Lord Ian Botham and his daughter Sarah Botham, long-time supporters of the Batten Disease Family Association, in the Houses of Parliament.
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