Hope for family where both siblings have Batten disease after fight for 'life-saving' drug
The family of two seriously ill children have met the Health Secretary in the hope he can overturn a decision over NHS funding for "life-saving" treatment.
Ollie and Amelia Carroll from Poynton in Cheshire both have Batten Disease.
Their parents have been campaigning for a drug that can slow its progression to get long-term NHS recognition.
NICE had deemed it too expensive.
They've now met with Matt Hancock to make their case:
Batten Disease is a rare neurodegenerative condition.
NICE estimates that there are currently around 30 to 50 children living with it in the UK.
Ollie and Amelia currently receive access to cerliponase alfa as part of a compassionate use programme by the pharmaceutical company that developed the drug.
Ollie's access to the drug was delayed but his sister Amelia received the treatment sooner and as yet hasn't developed any symptoms.
Matt Hancock has promised the family he will go to Head of NHS England to request their support in overturning NICE's decision to end use of the drug/trial on NHS.