‘Death sentence’ for Harry’s boy as family face £500k drug bill
THE plight of Ollie Carroll touched the nation when moving photographs emerged of Prince Harry cradling the six-year-old boy.
But now Ollie’s parents fear he has been given a death sentence – if, as expected, the experimental drug that is keeping him and his sister Amelia alive is withdrawn.
Last month, Harry made a special visit to London’s Great Ormond Street Hospital to see Ollie, who suffers from the rare neuro-degenerative disorder Batten disease. The Prince had previously met the youngster at an awards ceremony last October.
Ollie and Amelia have been taking part in a trial for a new enzyme-based treatment produced by Californian company BioMarin. But they and other children receiving the same treatment look set to become victims of the trial’s success.
The drug has now been licensed for use in America and Europe, meaning that Ollie, Amelia and other children receiving treatment are set to have it withdrawn.
Their parents have now made a desperate plea for the NHS to step in and pay for the treatment, which costs £550,000 a year for each patient – far in excess of its £100,000-a-year ceiling for rare-disease drugs.
The children’s mother Lucy said last night: ‘From now on any child with the condition will not be able to access this vital treatment without funding. But if it’s not funded by the NHS, who will pay for a drug that is keeping children like Ollie and Amelia alive? It’s like being handed a lifeline, then having it snatched away.’ Lucy and her husband Mike, from Poynton, Cheshire, hope Harry’s connection with the children will help raise awareness of Batten disease, an incurable condition that gradually robs its young victims of their personality, mobility, speech and sight, and causes seizures.
Although the new drug is not a cure, Lucy insists it is slowing down her children’s condition. Amelia had her first seizure last November and started the trial in February. An MRI scan after just three months showed no deterioration since.
‘The company says it will support those of us on its compassionate scheme for as long as it can, but we don’t expect that to go on indefinitely,’ she said. ‘It could take up to two years for NHS funding to be approved.
‘Batten does its damage to the brain very quickly, with the children’s condition deteriorating within weeks. If you stop treatment and have to wait for six months for the funding to come through, they might not even be here.
‘We don’t know how long we have left with our children. We’ve been told Ollie’s life expectancy is between six and 12 years. Every day we get to spend with them is a precious gift.’
Just five or six people are diagnosed with Batten disease every year in Britain. There are currently ten children trialling the drug in the UK.
Melanie Moffat, whose seven-yearold daughter Matilda was the first British child to have the revolutionary treatment, said: ‘The NHS needs to fund this drug as quickly as possible.’
Lynsey Brownnutt is also backing the campaign, having lost her sixyear-old daughter Ellie Mae to Batten. Her son Caleb, seven, has failed to get on the trial because of the speed at which his condition is deteriorating.
‘It’s like having our lifeline snatched away’