Batten disease treatment: Parents win battle ahead of court
Families of children with a rare degenerative disease have won their fight for funding for NHS treatment. The four children, from Newcastle and Cheshire, have Batten disease, which is incurable and causes seizures, visual impairment and mobility loss.

NHS England confirmed a "deal had been struck" to fund a drug which the families say slows the disease. Mum Gail Rich, of Tyneside, said "every second, minute, hour of campaigning was worth it".

The National Institute for Health and Care Excellence (NICE) had previously said it could not be certain it was value for money. The treatment costs £500,000 per child per year.

But NHS England said manufacturer Biomarin had agreed a "fairer price" for the drug, which is called cerliponase alfa. Seven-year-old Nicole Rich and her sister Jessica, three, from Throckley, Newcastle, currently receive the drug through a scheme funded by an America pharmaceutical firm.

Their parents, Gail and Matthew, said since taking it, Nicole had shown no further symptoms and Jessica had not developed any.

Speaking to the BBC, Mrs Rich said: "It's phenomenal the difference this treatment makes.

"That's why we were fighting for our daughters and every child in this country who needs it. Every child deserves the same chance.
Source: https://www.bbc.com/news/uk-england-49662279?intlink_from_url=https://www.bbc.com/news/health&link;_locati
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