Heartbroken parents of two terminally ill children have blasted the decision by the health watchdog to no longer fund their treatment.
Ollie and Amelia Carroll, seven and four, from Poynton, Cheshire, suffer from Batten disease, meaning they are unlikely to live past the age of 12.
Ollie’s plight became headline news and touched the nation last year after a striking image emerged of him being cradled by Prince Harry in Hospital.
And in December, his parents Lucy, 32 and Mike, 33, released moving footage of his reaction to hero Ed Sheeran’s song ‘Perfect’, which was the Christmas number one.
The couple have now revealed they are devastated by Nice’s decision to recommend cerliponase alfa should no longer be funded on the NHS.
Mrs Carroll claims the drug ‘showed positive signs of slowing the disease down’. It currently has no cure and scientists are desperately working to find one.
Ollie and Amelia Carroll, seven and four, suffer from Batten disease, meaning they are unlikely to live past the age of 12. His parents Lucy, 32 and Mike, 33, have revealed they are devastated by Nice’s decision to recommend cerliponase alfa should no longer be funded on the NHS
Ollie’s plight touched the nation in 2016 when a striking image emerged of the six-year-old being hugged by the Prince – dubbed his ‘Diana moment’
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.
‘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.
Ollie 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, 10, and Micky, nine.
He and his four-year-old sister Amelia (pictured with Prince Harry) suffer from Batten disease, which has no cure. Their condition means the siblings are unlikely to live past the age of 12
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.
‘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-saving potential and give hope.’
Nice says that only between one and six babies a year are born with late infantile Batten disease – the form Olly and Amelia have – and the treatment is expensive.
Its ‘preliminary decision’ is now open to public consultation.
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.
‘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 benefits into account, the committee considered that the drug was not a good use of NHS resources.’
Ollie first met Prince Harry at a prestigious awards ceremony in October 2016, where Ollie scooped the gong for the inspirational child category.
Heartbreaking footage of him was posted online in December, showing him shedding a tear as he listened to Sheeran’s tune ‘Perfect’.
Ollie was undergoing a brain infusion at Great Ormond Street Hospital for his rare genetic condition when the touching video was taken.
Heartbreaking footage was been posted online in December of Ollie shedding a tear as he listened to Ed Sheeran’s new tune ‘Perfect’, the UK Christmas Number One
He was able to meet the British superstar, who has more than 20 million followers on Twitter, when they cuddled backstage at Sheeran’s concert in Manchester last April.
His mother, Lucy, posted the emotional clip on Ollie’s Facebook page, called ‘Ollie’s Army Battling Against Battens’, which has 17,000 ‘likes’.
She told MirrorOnline at the time: ‘It was very emotional. Ollie really responds to music. We often play Ed Sheeran songs for him.’
Ollie’s aunt, Emily, wrote on Facebook: ‘Ollie’s mummy sent me this video of Ollie at Great Ormond Street today having his infusion.
‘Please watch carefully what Ollie experiences in this video. Music impacts Ollie so much (he especially loves Ed).
‘The fact Ollie responds to music lets us know that Ollie is aware of what is going on around him and a part of us believes he can still understand the words in the lyrics.’
She added: ‘I hope this video touches your heart. It breaks ours. We are sure Ollie knows he has his Army and that lots of people care about him.
‘Ollie’s Army helps him experience new things and we know that Ollie responds to these. Please continue to support Ollie’s Army for this brave little boy & his sister xx.’
Supporters of the cause reacted with emotions. One user wrote: ‘Bless him. That little tear broke my heart.’
Another said the ‘gorgeous’ boy’s tear also broke her heart, while a third described the clip as ‘touching’ and revealed it made her ‘tear up’.
Ollie, a fan of Sheeran, is no longer able to sing along to his favourite songs as the fatal disease has robbed him of his ability to speak
Prince Harry paid an emotional surprise visit to see Ollie in May after they met at the 2016 WellChild Awards, where he won the inspirational child category
PRINCE HARRY’S ‘DIANA MOMENT’
Prince Harry paid an emotional surprise visit to see Ollie in May after they met at the 2016 WellChild Awards, where he won the inspirational child category.
The 33-year-old Prince hugged him in the image which was reminiscent of a famous photograph of his mother, Princess Diana, embracing a young cancer sufferer.
The photograph of him hugging the Prince, who proposed to American actress Meghan Markle in November, at the event went viral and was seen by millions.
During the surprise visit, Harry also saw Ollie’s three-year-old sister Amelia when the pair received treatment at the Great Ormond Street Hospital.
Prince Harry spent one hour with family, including Ollie’s father Mike and mother Lucy. He spent an hour ‘talking, playing, laughing and making memories’.
The surprise meeting came just weeks after Ollie met his idol, singer-songwriter Sheeran, before his gig in Manchester.
The pop star, 26, then took to the stage wearing a red band promoting Ollie’s Army , a campaign which aims to spread awareness of the rare disease.
The 33-year-old Prince hugged him in the image which was reminiscent of a famous photograph of Princess Diana embracing a young cancer sufferer