THE family of Oscar Saxelby-Lee say they have been left sickened after internet trolls set up fake profiles using pictures of the five-year old in his hospital bed.
Oscar's mum Olivia Saxelby slammed the fake profiles set up on Facebook and Instagram as "disgraceful and insensitive" after they started using pictures of her seriously-ill son - with one linked to a scam fundraising page.
She has begged for those behind the sick posts to stop exploiting Oscar's situation.
Oscar, from St John's, Worcester, is currently in hospital in Singapore receiving treatment for a rare form of leukaemia and his family have been updating supporters on social media channels, under the name Hand in Hand for Oscar.
Their online campaign helped raise £600,000 so the family could take Oscar to Singapore for pioneering CAR-T treatment in a bid to cure him of T-cell acute lymphoblastic leukaemia.
Recent tests showed the treatment is working but his family say they have been hurt afresh after discovering that fake profiles using pictures of Oscar, Olivia and Oscar's dad, Jamie Lee, were being shared online.
One account uses pictures of Oscar and his mum under the heading 'Abrace o Arthur' or Hug Arthur and asks for money for 'special milk.'
Another shows pictures of dad Jamie sat at Oscar's hospital bedside.
Ms Saxelby said: "The most upsetting thing about these profiles is the insensitivity of the people behind them.
"They clearly do not see our heartache, daily pain and suffering or these would not exist.
"Oscar is five years old and suffering a great deal.
"His life is on standby. Our lives are on standby.
"There's nothing else productive for us to do right now than care for him and allow others to do the same.
"With our social media platforms, we are able to do this and we are able to express our feelings, emotions, thoughts and wishes.
"It's not a profile that should be impersonated and Oscar certainly should not be any sort of guinea pig for others' disgraceful comfort.
"We are disheartened by these people. Whoever they are, they need to stop."
Ms Saxelby said the situation was made worse by the inaction of social media giant Facebook, which also owns Instagram.
She said despite reporting the fake profiles the platform had failed to delete them.
She said: "I noticed it last week and we confronted them. People have been reporting but, unfortunately, Facebook kept responding with 'we haven't received an acceptable ID that matches the information listed on the account'. We have provided ID to prove Oscar's identity but still nothing.
"Facebook need some sort of page support with people working behind the scenes directly with users if a problem ever occurs like this."
The family has contacted Worcester's MP Robin Walker for help and he said he would be appealing to the social media giant to act.
He said: "It's appalling for people to take advantage of the situation like this and clearly this is something that Facebook and any online service provider ought to take very seriously.
"I'm very happy to look into this."
Mr Walker said the issue was complicated because Facebook is a multi-national platform - with one of the fake profiles appearing to have been set up in Brazil.
But he added: "There is a responsibility for Facebook to deal with this issue and this is exactly the kind of thing which deserves a prompt response."
Nigel Huddleston, Mid Worcestershire MP and assistant government whip, said he had been involved with work at the department of Digital, Culture, Media and Sport, to bring in laws forcing social media companies to act.
He said: "Facebook accounts to exploit somebody in a desperate situation like Oscar are despicable."
Mr Huddleston said social media companies had already committed to take down harmful online content but often didn't act as quickly as they should.
He said: "We will be bringing in legislation in the form of Online Harms Act to force companies to monitor and take down harmful and inappropriate content quickly or face penalties, such as fines, if they do not do so.
"There will be a new regulator to enforce these new laws."
Mr Huddleston said the legislation would come during this parliamentary session, making the UK the first country in the world to have an online regulator.
A Facebook company spokesman said: “Posts that impersonate or defraud people are not allowed on Facebook and we are sorry that Oscar Saxelby-Lee’s family has had to see these upsetting posts.
"We have removed several of these accounts and we are investigating to identify any that remain.”
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