A MUM has slammed a health watchdog’s decision to stop treatment which is prolonging her six-year-old daughter’s life being available on the NHS.

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 has been receiving an enzyme replacement treatment called cerliponase alfa for two years, 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) found this week after a thorough investigation that the treatment could not be recommended for NHS use due to "concerns about long-term effectiveness"

Kaycee’s mum Claire Riley, 46, says she will not stop fighting for her "daughter's future" but that her "heart is broken" after receiving the devastating blow.

Claire, 45, said: “After the email yesterday I just felt so shocked because after all the campaigning us and the families of other children have done, I really felt they would want to help our kids.

"Kaycee has not got any worse since starting this treatment, but if it stops she could be dead in 12 months.

"They have not met any of our children, it's all documents and pictures that they've made this decision from and I believe that just because something is not a cure does not mean the cost is not worth it.

"I just keep telling people that my heart is broken but I won't stop fighting for my daughter's future.

"She's not had a seizure since being on these infusions and to my knowledge from when were campaigning, not one child on it has died.

"I know there is no proof of how long it would help but surely children's lives are more important."

Before starting treatment, Claire claims Kaycee "rapidly" lost her speech, mobility and energy, but since having the treatment, more than 100 infusions in total, she has "more of a life".

However, the report, published by NICE, said: "In the absence of persuasive long-term evidence, the committee considered that the company’s assumptions around disease stabilisation, mortality and earlier diagnosis were unrealistic.

"It agreed that cerliponase alfa is innovative and has non-health-related benefits that are not captured in the analysis, and that these should be taken into account in its decision making.

"However, the company and NHS England were unable to agree a commercial arrangement [...] within the range NICE normally considers acceptable for highly specialised technologies.

"Therefore cerliponase alfa could not be recommended for use in the NHS in England."

However it did add that: "This recommendation is not intended to affect treatment with cerliponase alfa that was started in the NHS before this guidance was published."