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'We are angry, disappointed and completely heartbroken' drug that could terminally-ill children live longer won't be available on nhs.


THE parents of two terminally-ill children have been left 'heartbroken' after a health watchdog decided the drug they are treated with should not be made available on the NHS.

Ollie and Amelia Carroll have been diagnosed with rare genetic condition Late Infantile Batten Disease, meaning they are unlikely to live past the age of 12.

Over time they will lose their speech, mobility, eyesight and even the ability to swallow but for the last 12 months they have received a new treatment called cerliponase alfa.

The drug is currently being used as part of clinical trials but Ollie, seven, and Amelia, four, get it on 'compassionate grounds' from the drug company.

Parents Lucy, 32, and Mike, 33, say the medication has 'showed positive signs of slowing the disease down'. So they are devastated by health watchdog NICE's decision to recommend the treatment should not be funded on the NHS and say they don't know how long their children will continue to receive it.

Lucy, from Poynton near Stockport, 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. We have watched Ollie lose his abilities - how on earth do we watch this happen all over again to our beautiful little girl."

Ollie was diagnosed with the condition in February 2015, then came a second hammer blow when Amelia was diagnosed a month later. The couple have two other children - Danny, 10, 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 since this week's announcement.

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

Its 'preliminary decision' is now open to public consultation.

Dr Peter Jackson, from NICE, said: "In the 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."


Ollie with Prince Harry, left, and his dad and Ed Sheeran

Lucy and Mike Carroll with children, from left, Amelia, Micky, Ollie and Danny

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Publication:Manchester Evening News (Manchester, United Kingdom)
Date:Feb 15, 2018
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