Cheshire family meet Health Secretary in fight to save their children
Both Ollie and Amelia Carroll have Batten Disease.
Last updated 22nd May 2019
There's hope for the parents of two terminally ill children from Cheshire as they fight to get 'life-saving' treatment funded on the NHS.
Ollie and Amelia Carrol, aged eight and six, were diagnosed with CNL2 Batten Disease in February 2015. It's a neurodegenerative condition which robs children of their ability to walk, talk and see. It causes seizures and movement disorders and takes away a child’s ability to swallow, resulting in the child needing a feeding tube. Life expectancy is just six to 12 years.
There's no cure but both are currently on a trial at Great Ormond Street Hospital - which has had a massive impact on their health.
In February The National Institute for Health and Care Excellence (NICE) made the decision that the treatment should not be funded by NHS England.
LISTEN: We speak to Lucy Carroll in London about the difference the treatment has made so far:
Currently this treatment is available in 19 counties worldwide including Wales. The cost of this treatment, which consists of a four hour brain infusion every two weeks to replace the enzyme the child is lacking, costs half a million pound per child per year. However currently there are only 12 children in England who are in need of treatment.
In a meeting alongside their MP David Rutley, Lucy and Mike Carroll asked Health Secretary Matt Hancock to intervene. He has promised the family he will go to the Head of NHS England to request their support in overturning NICE's decision not to fund future treatment on NHS.