内容摘要："We all had a meal and Savannah sat there not eating - as a family it's heartwrenching and quite devastating."

"We all had a meal and Savannah sat there not eating - as a family it's heartwrenching and quite devastating."

Brineura slows the progression of disability by synthetically delivering a missing enzyme responsible for clearing waste from brain tissue.Phoebe believes that without the medicine, her daughter would be bed-bound.

"She might not even be still here with us, never mind the great energy and life and feistiness that she has," she said, adding she was terrified the treatment could now be taken away."If [it is unavailable], are our children going to be left to die?" she asked."It's unfathomable this is the situation."

According to NICE, a fortnightly 300mg dose of Brineura costsBDFA described it as a "groundbreaking" treatment that

between NHS England and BioMarin since 2019, with data gathered thereafter to consider whether the treatment could be approved permanently.

The agreement, extended for six months last October, expires on 27 May, with NICE telling the BBC there are currently no arrangements to enable access to Brineura "as part of standard NHS care" after that date."A couple of weeks ago we were attending seven different incidents, all at the same time, so, for a small building and a small team, that's really difficult."

Mountain rescue teams are reporting a record year for callouts.Both the Keswick and Coniston teams in Cumbria say they have had their busiest year ever, responding to more than 200 incidents between them.

Northumberland's two groups have also seen a rise in the number of incidents in 2024 from the previous year.Richard Warren, from the Lake District Search And Mountain Rescue Association, said: "It's been both busy and tragic, with four fatalities in December alone which is always hard for our teams".