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Parents slam decision to stop NHS treatment for terminally-ill siblings who charmed Prince Harry and Ed Sheeran – The Sun

THE parents of two terminally-ill children who have won over Prince Harry and Ed Sheeran have hit out at the health watchdog over its decision to no longer fund their treatment.

Their parents, Lucy, 32, and Mike, 33, have slammed the decision by Nice’s preliminary decision to recommend the treatment cerliponase alfa should no longer be funded on the NHS.

Youngsters Ollie and Amelia Carroll, aged seven and four, from Poynton, Cheshire, suffer from Batten disease which means they are unlikely to live past the age of 12.

Ollie captured the hearts of the nation when images emerged of him being cradled by Prince Harry in hospital.

Ollie’s parents released touching footage in December of Ollie’s reaction to his hero Ed Sheeran’s song ‘Perfect’, which was the Christmas number one.

Mrs Carroll claims the drug “showed positive signs of slowing the disease down”.

The disease currently has no cure and scientists are desperately working to find one.

She said: “We have always fought not just for our children but for all children with Batten disease. This will never stop.

“Today we are angry, disappointed and completely heartbroken.

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

“As parents we are struggling to comprehend how we face all this again with Amelia.

She added: “We have always fought not just for our children but for all children with Batten disease. This will never stop.

“Today we are angry, disappointed and completely heartbroken.

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

“As parents we are struggling to comprehend how we face all this again with Amelia.

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

Ollie, who has already been robbed of his speech, and Amelia will eventually lose mobility, eyesight and even the ability to swallow.

He was diagnosed with the condition in February 2015, then came a second hammer blow when Amelia was also diagnosed a month later.

The couple have two other children – Danny, ten, and Micky, nine.

The charity Batten 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.

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

"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 welcomed.

“However, in the absence of long term evidence about its effectiveness in stabilising the disease and preventing death, and having taken all the health and non-health-related benefits of cerliponase alfa into account, the committee considered that the drug was not a good use of NHS resources."



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Source: https://www.thesun.co.uk/news/5578456/parents-nhs-treatment-batten-disease-siblings-prince-harry-ed-sheeran/

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