A MOTHER has slammed a health watchdog’s decision that could halt treatment which is prolonging her five-year-old daughter’s life.

Kaycee Bradshaw, who is the youngest of six siblings from Sutton, was diagnosed with Batten disease in 2016.

Children with the condition rarely survive past the age of 12. The disease causes patients to have seizures, muscle spasms, progressive dementia, visual impairment leading to blindness. It also results in the loss of speech and mobility.

Kaycee is currently one of five children receiving an enzyme replacement treatment called cerliponase alfa, which slows the effects of the incurable condition

However, with the treatment costing more than £500,000 per patient, the National Institute for Health and Care Excellence (NICE) has issued a preliminary decision for the treatment to not be available on the NHS.

Kaycee’s mum Claire Bradshaw is joining other parents across the UK to raise awareness of a decision which she says leaves “children’s lives in the hands of strangers”.

She wants people to sign a petition to have the decision reversed. It has already attracted more than 35,000 signatures.

Claire, 45, said: “Since Kaycee has been getting enzyme treatment she has not deteriorated – if anything she has had some minor improvement and is going to school, talking, smiling and eating.

“These are things she couldn’t do before very well – which is a miracle considering most children are bed bound in less than 12-months of their initial diagnosis – which for us was 14 months ago.

“I am not usually a positive person but I really did not see them making this decision after knowing the good it does helping children across the world with this. It has devastated our entire family.

“This decision is putting children’s lives in the hands of strangers.”

Kaycee has been receiving the treatment at Great Ormond Street Hospital in London and has currently had 31 infusions to date.

Claire added: “At the moment her treatment – which they’ve ruled as compassionate use – will continue until they make the decision official, but other babies just diagnosed are already being turned away.

“I know my daughter will die, this disease is terminal, but they are going to make her lose precious time with her siblings if this decision goes ahead.

“They have this miracle so how can they even think to take this option away for children like our Kaycee?”

The decision has led to an outcry in national newspapers.

Andrea West , chief executive of the Batten Disease Family Association (BDFA) said: “We need everyone to help us challenge this unjust and inaccurate decision, we see on a daily basis that this is a treatment that works.

“We call on everyone to help us give hope to those children and families living with this devastating diagnosis, it has never been truer that together we will make a difference.”

The report, published by NICE, said: “The committee recognised that CLN2 (Batten Disease) is a devastating condition, with a debilitating and life-limiting impact on the children affected, and it has a significant emotional and financial impact on their families. It was convinced that cerliponase alfa offers an effective treatment option in the short term.

“However, in the absence of long-term evidence, the committee considered that company’s assumptions around disease stabilisation, mortality and earlier diagnosis were unrealistic.”

The second evaluation meeting will take place on March 20.