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ill children told NHS will no longer pay for their treatment

canadian goose jacket “Heartbroken and angry” parents of two terminally Ollie, seven, and Amelia Carroll, four, have rare genetic condition Late Infantile Battens Disease, which will slowly rob canada goose stockists uk them of their speech, mobility, eyesight and even the ability canada goose outlet reviews to swallow13:12, 14 FEB 2018Parents Lucy and Mike Carroll have been left ‘heartbroken’ after a health watchdog decided treatment for their two terminally ill children should canada goose outlet in usa no longer be funded (Image: MEN Media) canadian goose jacket

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The parents of two terminally ill children have been left “completely heartbroken” after a health watchdog ruled canada goose outlet authentic the NHS should no longer fund their treatment.

Canada Goose online Ollie, seven, and Amelia Carroll, four, from Poynton, are not expected to live beyond 12 after being diagnosed with rare genetic condition Late Infantile Battens Disease Canada Goose online

The disease will slowly rob them of their official canada goose outlet speech, mobility, eyesight and even canada goose outlet houston the ability canada goose outlet store uk to swallow.

Canada Goose sale Ollie was diagnosed with the condition in February 2015 then came a second hammer blow when Amelia was also diagnosed a month later. Canada canada goose vest outlet Goose sale

But parents Lucy and Mike, 32 and 33, were given a glimmer Canada Goose Outlet of hope over the past 12 months as the youngsters had ‘showed positive signs’ of the disease slowing down after being given a revolutionary treatment called cerliponase alfa as part of a compassionate trial.

canada goose coats on sale “That little tear broke my heart”: Terminally ill boy who can’t speak has beautiful reaction to Ed Sheeran song canada goose coats on sale

buy canada goose jacket cheap So they were left “angry, disappointed and completely heartbroken” when health watchdog NICE recommended the treatment should no longer be funded on the NHS. buy canada goose jacket cheap

canada goose deals Lucy told Manchester Evening News : “We have always fought not just for our children but for all children with Batten Disease. This will never stop. canada goose deals

canada goose coats canada goose outlet eu “Without this treatment Ollie will deteriorate extremely fast, the thought of how fast makes us feel physically sick. canada goose coats

Canada Goose Jackets “As parents we canada goose outlet black friday sale are struggling to comprehend how we face all this again with Amelia. Canada Goose Jackets

“We have watched Ollie lose his abilities how on earth do we watch this happen all over again to our beautiful little girl.”

canada goose black friday sale The couple have two other children Danny, 10, and Micky, nine. canada goose black canada goose outlet england friday sale

cheap Canada Goose The charity Batten canada goose outlet uk Disease Family Association has launched a petition to have the decision reversed. It has already attracted more than 25,000 signatures in the 48 hours since Monday’s announcement. cheap Canada Goose

A spokesman for the charity said: “This decision sets a precedent for not just this treatment but for all potential future treatments.

canada goose “In a public health system we need to evaluate the effectiveness of treatments but we need a fundamental change to the process to ensure that we can quickly access treatments that have life canada goose womens outlet saving potential and give hope.” canada goose

buy canada goose jacket “I walk out sweating, stressed and in tears”: Mum of terminally ill boy cradled by Prince Harry slams “horrifying” state of disabled toilets buy canada goose canada goose factory outlet vancouver jacket

Health watchdog NICE say there are only between one and six babies a year born with Late Infantile Batten Disease and the treatment is expensive.

Canada Goose Parka Its ‘preliminary decision’ is now open canada goose outlet orlando to public consultation. Canada Goose Parka

canada goose clearance Dr Peter Jackson, from NICE, said: “The committee agreed that, although cerliponase alfa is not a cure, it is an innovative treatment that is effective in the short term in slowing the rate at which it progresses. canada canada goose outlet us goose clearance

canada goose store “Given the significant burden this disease places on parents and carers of children with the condition, and the subsequent negative impact this can have on the quality of their lives, anything that can help to improve the treatment of these children is to be canada goose outlet woodbury welcomed. canada goose outlet in new york canada goose store

canada goose clearance sale “However, in the canada goose outlet factory absence of long term evidence about its effectiveness in stabilising the disease and preventing death, and having taken all benefits into account, the committee considered that the drug was not a good use of NHS resources.” canada goose canada goose uk clearance sale.

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