THE mum of a six-year-old girl with a rare terminal condition is "walking around in the happiest bubble" after learning the drug prolonging her daughter's life will now be available on the NHS.

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

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Kaycee Bradshaw

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, also known as Brineura, which slows the effects of the incurable condition.

Brineura can slow the progression of the disease and some children like Kaycee have taken part in a trial or are being given the drug on compassionate grounds by ­pharmaceutical manufacturer BioMarin.

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Claire can't wait to come home with Kaycee and celebrate with the rest of her family

But this was under threat as treatment cost more than £500,000 per patient, so the NHS and NICE – the National Institute for Health and Care Excellence labelled it "too costly".

However, parents, such as Kaycee's mum Claire Riley, did not back down and alongside their MPs and advocates, tirelessly campaigned for treatment costs to be lowered to save their children's lives

Today, Wednesday, September 11 it was announced that after years of battle, the NHS has successfully struck a deal with manufacturers to provide the treatment.

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Claire and Kaycee

Claire, 46, said: "I absolutely can't explain how over the moon I felt at hearing that news, I had started to give up hope but to hear that it's a big fat yes has just made my year.

"I feel like I'm walking around in the happiest bubble, I couldn't believe it and I've had everyone calling me to say they've seen it too.

"I'm here in London now with Kaycee having treatment, and now we know that next time we don't have to be nervous it will be stopped, we'll have her now for another 20 to 30 years, isn't that amazing?

"I just want to run around Great Ormond Street Hospital and tell anyone and everyone this news, babies are going to have this now, Kaycee will have this now with no worries.

"I feel like the biggest and heaviest weight has been lifted from my shoulder, the whole family's shoulders.

"I want to thank everyone who sent messages of support, anyone who held any events or backed us in this fight. It's not just for Kaycee it's for everyone with Battens.

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"Thank you especially to Marie Rimmer who no matter what kept fighting for us, kept being in our corner, even when we didn't know she was fighting, thank you so much.

"I just can't wait to get home to everyone and celebrate."

The NHS will now offer this treatment to Batten disease sufferers not currently receiving treatment by Christmas at the latest, with those being treated on compassionate grounds currently

Professor Stephen Powis, NHS national medical director, added: “This is important news for children and their families suffering from this devastating disease who can now have access to a life-changing treatment, having endured a long wait for the company to make a fair offer.

“This latest deal coming on the back of a number of other recent successful negotiations demonstrates that there is no reason for other companies not to show equivalent flexibility in order to benefit NHS patients, taxpayers and indeed themselves.”

Cerliponase alfa, also called Brineura, is an enzyme replacement therapy administered directly into the brain via a surgical implant which clinical evidence has shown can slow the deterioration of mobility and speech in the short-term.

NHS England reached a confidential deal with the company which benefits patients and taxpayers so it is available on the NHS while further evidence is collected.