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Great Ormond Street Hospital in London has started trials for a new drug which they believe could hold the key to halting sight loss in children with CLN2 type Batten disease.

Batten disease affects just 50 children in the UK and is a rare genetic condition that causes seizures and possibly loss of vision, inability to walk, talk or see.

Without treatment, the life expectancy of children with the disease is between 10 and 12 years.

The new trial treatment restores the enzymes that allow the eye to function, which clinicians hope will succeed in restoring vision.

Dr Paul Gissen, Honorary Consultant in Pediatric Metabolic Disease at Great Ormond Street Hospital, in an interview with the Guardian, said: “Enzyme replacement therapy delivered to the brain has completely changed the lives of children with Metabolic Disease. CLN2 type batten for the best. , but it has been difficult to see their eyesight deteriorate even though their other physical symptoms are better controlled.

“GOSH’s multidisciplinary team worked hard to find a way to try and treat this and it was only possible through fundraising and the tireless work of the families of the patients.”

An eight-year-old girl from Cheshire has become the first person to receive the treatment in the world.

Batten’s disease is an inherited disease that siblings of those affected have a 25% chance of having it.

Both Amelia Carroll and her brother Ollie have the genetic condition. Unfortunately, Ollie being older, his eyesight has already deteriorated too much to benefit from the trial treatment.

There is currently no NHS funding for the trial and so far it has been privately funded by the families involved.