Go Unlimited with Magzter GOLD
Get unlimited access to 10,000+ magazines, newspapers and Premium stories for just
Try GOLD - Free
'Inhumane decision' denies drug for kids with cruel disease
Daily Express
|August 16, 2025
CHILDREN born with a rare life-limiting disease will no longer be entitled to funding for a drug that slows down their condition.
The National Institute for Care Excellence, which oversees healthcare, has ruled that anyone diagnosed with Batten disease type CLN2 from January 1 will not receive enzyme therapy drug Brineura.
Symptoms of the condition include seizures, dementia, immobility, loss of speech and blindness.
Sufferers have an average lifespan of between six and 12 years.
Inhumane
Lucy and Mike Carroll, 41, from Cheshire, are parents to Ollie 14, and Amelia, 12, who both have Batten disease and have been receiving the drug for nine years.
This story is from the August 16, 2025 edition of Daily Express.
Subscribe to Magzter GOLD to access thousands of curated premium stories, and 10,000+ magazines and newspapers.
Already a subscriber? Sign In
MORE STORIES FROM Daily Express
Daily Express
I've no idea as no meat is on bones
ENTREPRENEUR Louise Duerr, 59, was pleased to see a reform of business rates at the Budget, but has no idea yet what it will mean in pounds and pence.
1 min
November 27, 2025
Daily Express
MIDWIVES ANSWER THE CALL
Ahead of two festive episodes, boss Heidi Thomas says no amount of money will lure her away from the drama
4 mins
November 27, 2025
Daily Express
Unai delays Elliott call
UNAI EMERY admits Aston Villa could face a decision on Harvey Elliott's future in January.
1 min
November 27, 2025
Daily Express
'A BUDGET FOR BENEFIT STREET PAID FOR BY WORKING PEOPLE'
KEMI Badenoch blasted a \"Budget for Benefit Street\" as Rachel Reeves yesterday hit hardworking Britons with a £26billion tax bombshell.
4 mins
November 27, 2025
Daily Express
GUNNERS KANE 'EM
Arteta's stars put on masterclass as Harry & Co take an Emirates beating
2 mins
November 27, 2025
Daily Express
Ex-Marine faces jail for driving into parade of Liverpool fans
AN ex-Royal Marine Commando heard yesterday he faces a lengthy jail sentence after admitting ploughing into a street of terrified fans at a Liverpool FC victory parade.
2 mins
November 27, 2025
Daily Express
'We have to stick together and work as a family..'
LEEDS STAR PUTTING VALUES INTO PRACTICE ON AND OFF PITCH WITH UNITED MESSAGE
3 mins
November 27, 2025
Daily Express
How Reeves' latest tax raid will hit your finances hard
Bills to rise for pensioners and workers
3 mins
November 27, 2025
Daily Express
The only way is MGS6 for EVs
The MGS6 has hit the road in the UK, arriving with a series of specifications and motor options.
1 min
November 27, 2025
Daily Express
New life in the old(est) bird yet
WISDOM, the world's oldest bird, has returned to her nesting spot - giving hope she may have another chick at the age of 75.
1 min
November 27, 2025
Listen
Translate
Change font size