Amelia Carroll is facing a very uncertain future because her family can’t afford her treatment
A Liverpool FC-mad family are hoping their footballing favourites can help them in their fight to get life saving treatment for two of their children.
Ollie and Amelia Carroll, aged eight and six, suffer from a rare genetic disease which affects their brains.
Although they were born as seemingly healthy children, CLN2 Batten Disease causes waste materials to build up in the brain, which could kill Ollie and leave Amelia in a wheelchair if left untreated for 12 months.
However the treatment will no longer be recommended for NHS use over “concerns about its long-term effectiveness” so the family are having to come up with potentially millions of pounds a year to fund it themselves.
The National Institute for Health and Care Excellence (NICE) said the decision not to recommend the drug – cerliponase alfa – came “at the end of year-long negotiations” between the company which produced it and NHS England.
Amelia was recently lucky enough to be LFC ‘s mascot when they played Manchester City at Anfield, and walked out next to defender Andrew Robertson.
Danny Carroll, 11, Alex Oxlade-Chamberlain, Amelia Carroll, six, and her dad Mike Caroll, 35.
Lucy, 33, who is a mum to four children, told the ECHO : “Amelia won Andy’s heart on that day and after hearing about Amelia’s condition he invited Amelia and the whole family in to meet him at Liverpool’s training ground, Melwood.
“He sat down and listened to us explain everything while Amelia was sat there giving him cuddles. He’s got kids himself so he understands and was just devastated.
“He is such a genuine, down to earth, lovely guy.
“He said it’s really unfair and that he wants to help us get this treatment, not just for Ollie and Amelia but for the other children who are suffering with this disease in the UK.”
Amelia Carroll, six, with Liverpool FC striker Mo Salah, at Melwood in Liverpool (Image: Daily Miiror/The Carroll Family)
Amelia goes to a mainstream school and can still run around, although her speech is slightly behind her peers.
Lucy said: “We were told she would never learn new words and she would never learn new things but she has, and she’s learning new things all the time. If you looked at her you would never think she was poorly. She goes swimming, dancing, gymastics.
“Amelia has only has one seizure before treatment and hasn’t had a seizure for the full two years that shes been on treatment. For Amelia, the treatment has stopped it dead in its tracks, but for Ollie its slowed it down, and Ollie’s not had a seizure in 18 months and before he was having hundreds a day.
Ollie, eight and Amelia Carroll, five, the children of Lucy and Mike Carroll, who both have Batten disease – a genetic condition, currently incurable.
“Ollie’s quality of life is amazing now even though he’s in a wheelchair and can’t talk, he can go on holiday and go swimming and interact with all his friends. Before he was in a bed all day.”
On the day at the ground, the family met the rest of the team after watching them train.
Lucy, from Poynton, Cheshire, added: “It was an incredible day. They were so nice and all had time for us.
“Amelia loves football. She runs up to a football pitch with a pink tutu on kicking footballs about. Van Dijk took his gloves off and gave them to my son Danny and Andy gave Amelia and Ollie signed purple shirts with their names on, as presents.”
Other presents the family received included signed footballs and signed shirts from each player, some of which will be sold at the charity ball ‘A Brother’s Wish’ being arranged by older brothers Danny, 11, and Micky, 10, on September 14 in Knutsford.
Amelia Carroll with LFC manager Jurgen Klopp
Lucy said they are still discussing with LFC what help they can give them in the future but says the signed club items will be a start.
To donate to Amelia and Ollie’s fight for treatment click here and visit their Facebook page here .
Meindert Boysen, from NICE, said: “The committee concluded that it is not possible within the NHS to manage complex components of the confidential commercial arrangement proposed by the company.
“Once these elements are excluded, the cost-effectiveness estimates for cerliponase alfa are far higher than NICE normally considers acceptable for highly specialised technologies.”
