THE mum of a six-year-old girl says she would move abroad if the NHS takes away the drug which is prolonging her 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, 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.

But this could end at any time as the treatment costs more than £500,000 per patient, so the NHS and NICE - the National Institute for Health and Care Excellence has labelled it "too costly".

Kaycee’s mum Claire Riley has joined the fight with other parents across the UK to raise awareness as two children waiting for treatment have already died since the start of discussions.

The treatment is available in 21 countries, including Wales, so families are now fighting back, with some even moving abroad to ensure their children can access this drug.

Claire, 46, said: "We are lucky that we got on the trial before all of this for Kaycee, but if a decision is made against her having it then she would be gone in a matter of months.

"Kaycee has not got any worse since starting treatment, in fact there are some improvements.

"We have been told to prepare for her death one minute then after having this treatment, we've been advised to find a carer for her after we both pass away, so OK it's not a 'cure' but it's pretty close.

"Three other families are now waiting to see if they can get treatment, this disease is fast acting, and all of this waiting will mean less of their children will be saved.

"One dad has had to move to the Netherlands with his son leaving his wife and other child here to get his son treatment, that's what this is doing, it's breaking up families.

"I have six children, and I have grandchildren too.

"We've just moved into a new home for Kaycee's needs but I'd move abroad if I needed to to save Kaycee, but I'd be separated from my older children and it would break my heart.

"Companies like BioMarin are not putting children's lives, and the lives of their families first, it's all about money."

Marie Rimmer, MP for St Helens South and Whiston, said: "I completely agree with Claire, BioMarin have it within their power to come back to the table and offer a price that works for them and the NHS.

"This is not like negotiating the cost of new computers, these are life changing drugs and companies like BioMarin have a moral duty to put children’s lives before profits.”