A life-saving medicine for children with Batten disease, a rare and fatal genetic disorder, is set to be pulled from the ...

Siblings Ollie, 14, and Amelia Carroll, 12, both have Batten Disease, which is an incurable genetic disorder that causes rapid decline in a child's ability to walk, talk and see. Even though the ...

CLN2 Batten disease is an incurable genetic disorder that causes rapid decline in a child's ability to walk, talk and see. Phoebe, from Coventry, said daughter Flory's doses of Brineura ...

Ms Wrighting said: "It was amazing to meet Aimee, Isaac and family in Parliament yesterday, and hear about the campaign for children with Batten disease. "I was really touched by the strength they ...

The father of a nine-year-old girl with a rare disease likened to childhood dementia has called for health bosses to prolong access to a "miraculous" treatment. Addy Clarke, from Swindon, was four ...

Nine-year-old Jessica, from Throckley, has Batten disease, a very rare and serious ... Credit: ITV Tyne Tees 'What is the price of a child's life?' The Riches have already lost their eldest ...

The family of nine-year-old Charleigh Pollock will continue to be covered for the drug, which costs $1 million a year, until ...

Flory, from Coventry, has CLN2 Batten disease ... hoped the government would keep the treatment going to allow children with the disease a "much better life". "It's not curing, the research ...

Funding for Charleigh's life-sustaining medication has been extended for another three months, according to her mom.