A family has been told their child will continue to get access to a drug which she began taking as part of a trial, and is helping to keep her alive.
Nine-year-old Addy Clarke, from Swindon, has Batten Disease – a rare degenerative disease that has no cure.
An agreement has been reached that existing patients will continue to have the drug Brineura, which costs £500,000 per patient per year, via the NHS.
However, it has not been recommended for future patients "due to its high price and the limited evidence of long-term effectiveness", said the National Institute for Health and Care Excellence (NICE).
Addy's mother Hayley Clarke said she is "absolutely thrilled and relieved and so thankful" at the news but wants to get access to the drug for other children.
"There's still another half a fight to go to get it secured for all children, future children most importantly," she added.
She said the family could have lost Addy by now, that she should be blind, but her eyesight has been preserved and she can still make herself understood.
One of the main symptoms of Batten Disease is childhood dementia.
