Batten disease families granted permission for high court battle

Two families whose both children have a rare genetic disease have been given the green light to take a fight for lifesaving treatment to the High Court.

The four children, from Cheshire and Newcastle, have the neurodegenerative condition known as Batten disease, which is incurable and causes seizures, visual impairment and mobility loss.

Their parents have been refused funding for a drug which could slow its progression after regulatory body, The National Institute for Health and Care Excellence (NICE) concluded in February, that it could not recommend the drug through NHS England due to funding.

The children have now been granted permission for a judicial review to be held into legality of the decision not to approve the use of the drug.

Oliver Carroll, who is eight, and his sister Amelia, six, from Cheshire both have a diagnosis of Batten disease.

Their parents, Lucy and Mike Carroll, said it was "heart-breaking that the NHS considered that it could put a price on their children’s lives."

A full hearing in the High Court is now scheduled to be held on 16 and 17 October.

NICE has said it is unable to comment on the legal proceedings.