Sunday Mirror (Northern Ireland)
Harry’s support gives us all hope
PRINCE HELPS IN BATTLE FOR VITAL DRUG
HE is the little boy who captured the nation’s hearts when he shared a special moment with Prince Harry.
Ollie Carroll, six, is battling an incurable condition that robs youngsters of their sight, speech and mobility.
He is one of 10 children with Batten disease being given a new drug at London’s Great Ormond Street Hospital.
The compassionate trial is being paid for by the US firm that developed it and Ollie’s mum Lucy, 32, says it has worked wonders for him and his sister Amelia, four, who also has the disease.
But the expensive drug, Brineura, has now been approved for commercial use so families fear it will be withdrawn at any time and are campaigning for the NHS to fund it.
Ollie and Amelia, from Poynton, Cheshire, are receiving great support thanks to the Ollie’s Army Battling Against Battens, an online fundraising campaign to pay for fortnightly trips to London for treatment and other costs. Famous supporters include the prince, who first met Ollie at the WellChild Awards last October.
Lucy said: “Ollie had lost his ability to walk and to stand unaided but when we met Prince Harry, Ollie must have liked him because he used all of his strength to stand up and give him a cuddle.
HUGGED
“Harry was amazing. Ollie was on my knee and he just got up and hugged him. it was the most heartwarming moment.”
At the ceremony, which saw Ollie receive the Inspirational Child award,
Lucy told Harry of the battle to get the drug that could prolong their kids’ lives. When she got the good news that they would both get the drug, she wrote to the prince and invited him to visit them at Great Ormond Street.
Lucy got a phone call last month to say Harry would be there.
The prince, 32, spent an hour playing with Ollie and Amelia, as our exclusive pictures show.
“I think that just proves what a kind, down-to-earth type of guy he is,” said Lucy. “He was completely on his own and had a general chat with us but he wanted to spend time with the children. Harry asked them what they were doing and they played together.
“I think Ollie and Harry have a special bond – Harry was making him laugh and giggle. You can see how he cared.”
Ollie was born healthy but when he was two, his parents Lucy and Mike, 33, noticed his speech was behind. He soon began tripping over his own feet and at three and half, he had a seizure.
His devastated parents were told he had Batten disease, a genetic condition that leaves kids with a life expectancy of between six and 12 years.
Ollie started his treatment last November, Amelia has been on it for three months and neither has shown any deterioration since.
Matilda Moffatt, seven, from Leeds, was the first child in the UK to start the trial. Her mum Melanie, 40, says her daughter wouldn’t be here without the drug and is desperately worried it will end.
HOPE
“It’s really upsetting,” she said. “If they do take it away, how long have I got left with her?
“When your child is diagnosed you go through a grieving process.
“Every time you lose a little bit of her you grieve again. The trial has given me hope.”
Lynsey Brownnutt, 38, lost her daughter Ellie-May, six, to Batten two years ago and has a son, Caleb, seven, with the disease. Both narrowly missed out on the drug because their condition was too advanced. She said: “It’s such a fast-acting disease, these children don’t have time to wait.”
The three mums have come together to push the NHS to fund the treatment to help the five children diagnosed each year with the disease in the UK. They fear just a few months off the enzyme therapy could be the difference between life and death.
It has been funded so far by California-based BioMarin but parents are worried the NHS will refuse to foot the bill when the trial stops. The fortnightly treatment is likely to cost more than £500,000 a year for each patient
Lucy added: “The staff at Great Ormond Street have been brilliant and the pharmaceutical company in America. But the drug needs to be funded by the NHS and quickly.”
Harry was amazing. Ollie was on my knee and he just got up and hugged him
LUCY CARROLL ON PRINCE’S HOSPITAL VISIT