Crowdfunding campaign launched for terminally ill siblings visited by Harry
A crowdfunding campaign has been launched to fund treatment for two terminally ill siblings who captured the heart of the Duke of Sussex.
The GoFundMe page for Ollie Carroll, eight, and his sister Amelia, six, has raised £14,800 of its £100,000 goal in three days.
An image of Ollie throwing his arms around Harry at the Wellchild children’s charity awards in 2016 was viewed around the world.
Ollie and Amelia, from Poynton in Cheshire, suffer a rare genetic condition called late infantile Batten disease, which affects four to five children in the UK each year.
Over time, sufferers lose their ability to walk, talk and swallow, and experience seizures, dementia and sight loss, while life expectancy is between just six and 12.
Harry was so moved by the siblings’ situation that eight months after meeting Ollie he paid a private visit to Great Ormond Street Hospital to see him and meet Amelia.
Mother Lucy Carroll told the Daily Express: “We thanked him for giving our son the strength to stand when we thought this was no longer possible.
“For an hour Prince Harry sat with us talking and playing with our children, laughing and making memories.”
The two children are receiving an enzyme replacement therapy every fortnight paid for by American pharmaceutical company BioMarin on compassionate grounds.
The arrangement was intended to be temporary until the NHS agreed to take over funding.
But healthcare watchdog the National Institute for Health and Care Excellence (Nice) has decided it is too expensive and there is not enough evidence to support introducing the drug.
The family wrote on their GoFundMe page: “Whilst Nice acknowledges that the treatment improves children’s quality of life and slows deterioration, they question its long term effectiveness.
“Without treatment Ollie and Amelia will rapidly deteriorate. In twelve months time, the harsh reality is that Ollie could be dead and Amelia would be left in a wheelchair, unable to speak or eat and be completely blind.”
Lucy and her husband Mike have also set up a Facebook page called Ollie’s Army Battling Against Battens and a website OlliesArmy.co.uk to document their fight.
Copyright (c) Press Association Ltd. 2019, All Rights Reserved. Picture (c) OlliesArmy.co.uk
