'Inhumane decision' denies drug for kids with cruel disease

CHILDREN born with a rare life-limiting disease will no longer be entitled to funding for a drug that slows down their condition.

- By Julia Etherington

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.