The parents of a two-year-old girl suffering from childhood dementia have been subjected to additional anguish as ruthless scammers threaten their efforts to save her life. Leni Forrester has Sanfilippo Syndrome, a rare genetic condition that progressively deprives a child of the ability to walk, talk, and eat, resulting in a drastically shortened life expectancy.
Her parents, Emily, 33, and Gus, 35, from Sevenoaks, Kent, were unaware of her condition until a routine genetic screening for Emily's sister revealed a rare gene. Initially, a private medical test gave the family the 'all-clear,' leading them to believe Leni was healthy and encouraging them to try for another child. However, doctors soon delivered devastating news: the results were incorrect, and both Emily and Gus were carriers. Just a week before Leni's second birthday, it was confirmed she had Sanfilippo.
Confronted with a heartbreak no parent should endure, Emily and Gus have been tirelessly fundraising to secure life-saving treatment for their daughter. Currently, there are four promising clinical trials for which Leni could be eligible, but it is a 'race against time' to launch these trials. Once the disorder progresses and Leni loses cognitive abilities, they cannot be regained. Without treatment, the cheerful little girl may only survive into her early to mid-teens.
The family has raised over £380,000 so far, but copycat fundraisers and fake social media profiles are emerging relentlessly. Evil fraudsters are posing as the family to scam donations for themselves. 'They're the lowest of the low,' Emily told the Mirror, describing the ordeal as a 'real violation.'
'The initial feeling was disgust and horror that people are using a terminally ill child to scam people out of money,' Emily said. 'I just can't think of a worse person, to be honest. And then it was kind of this real panic that actually people are donating to the scammers.'
The mother has been frantically trying to get these profiles removed from social media platforms. At the time of our conversation, a YouTube profile pretending to be Emily, which had stolen content from her legitimate social media accounts, was still online. It linked to a scam fundraiser that had four payments of exactly £500, each with the same comment. Experts told the Mirror this might indicate potential money laundering.
The platform hosting the fake fundraiser, social.fund, has since suspended the campaign. Its founder, Vaibhav Asthana, said: 'Campaign integrity is fundamental to what we do at Social.fund. As soon as this impersonation was identified, we acted quickly to review and suspend the listing to prevent any potential misuse.' After the Mirror flagged the fake account to YouTube, it was removed. A YouTube spokesperson stated: 'Upon review, we've terminated the channel flagged to us for violating our Spam, deceptive practices, & scam policies.'
There is only one official fundraising page to help save Leni's life, hosted on the reputable platform GoFundMe. The family's real TikTok account is also available. Despite swift action, fraudulent accounts continue to appear online, causing constant agony for Leni's family.
'We wouldn't be putting our child's face in the public eye if we felt we had a choice,' Emily said. 'But we don't feel we have a choice, we're doing it to try and save her life and yet we've kind of lost control of those images and it just feels it's really scary.' She added: 'It is taking so much when we're already spread so thin. We're already in this fight for our child's life and then on top of that we now have to constantly monitor and worry about all of these fake profiles.'
Emily has received great support from GoFundMe, which swiftly removed copycat fundraisers on their platform after the Forresters' fundraising gained momentum. However, reporting and flagging other scam profiles using Leni's image on social media platforms has been exhausting. TikTok quickly removed a fake profile the Mirror highlighted for breaching its impersonation policies, which had a donation link to PayPal in the bio. The company says it will continue to monitor and remove any further profiles.
This issue is part of a much larger and terrifying problem in the UK. Fake fundraisers are often operated from abroad and can be part of organised crime, used for money laundering or even funding terrorism.
Professor Mark Burton, Co-Director of the Centre for Cybercrime and Economic Crime at the University of Portsmouth, explained that 'these type of internet-based frauds are constantly evolving and changing.' This makes it difficult to pinpoint exact figures for fake fundraisers, but based on the latest data, 'you're looking at tens of thousands if not hundreds of thousands of fake profile related fraud.'
'There are people that specialise just in setting up fraudulent websites and as soon as the authorities take them down,' he warned. 'They set them up again as quickly as possible and that's just their role. They don't do any other thing other than that, they obviously take a percentage from the fraudsters.'
The expert noted that Leni's case is a classic example of something that 'evokes very strong feelings and that people want to give money to. That's why the fraudsters copy that, because they know that will be successful, and they don't care about the impact on the family.' He added that these scammers are 'industrialised' and 'very skilled.'
Professor Nicholas Ryder, former Special Advisor to the Home Office for its investigation into fraud, said of Leni's case: 'What you've got here is a very common type of fraud in terms of cyber crime and fraud. It can be used by the one-off scammer, but more worryingly it's also linked into organised criminal gangs and it's also used by terrorist financiers. This has been confirmed by multiple academic studies and financial crime stakeholders. So the link between fraud and organised crime is significant and is increasingly becoming linked in relation to terrorism.'
He added that the 'levels of sophistication makes it virtually impossible to police and prevent,' but pointed out the government has introduced new mechanisms 'to try to counteract the so-called fraud farms all over the world.' The professor warned that 'fraud is now on an industrial scale' and regularly targets 'vulnerable people.'
'Fraud is the most frequently reported crime in the UK. So it's over 40% of all UK crime. And last year, there were 4.5 million reported instances of fraud. Academic research suggests it could be in excess of total losses per year of £200 billion a year,' he told us, adding that 72% of fraud in the UK is conducted by perpetrators overseas, making it hard to police.
The Fundraising Regulator's Chief Executive, Gerald Oppenheimer, said that personal cause fundraising is not fully regulated, but it can be 'an effective way of helping someone directly – especially in situations like Leni's.' He added that major platforms like GoFundMe 'invest heavily in fraud prevention' and advised anyone wanting to donate to a personal cause to check if the platform is on the fundraising regulator's directory.
Gerald advised: 'Keep an eye out for red flags such as spelling mistakes, vague or partial information, the extensive use of AI-generated imagery, or a record of donations showing identical amounts or comments.' Fundraisers originating abroad are 'high risk' and should be carefully considered.
The National Crime Agency estimates that 67 percent of fraud in the UK is cyber-enabled, and in 2024 fraud made up 41 percent of all crime in England and Wales. A spokesperson told the Mirror: 'Fraudsters are adaptive. They are increasingly targeting individuals, businesses and the public sector online and at great scale, as well as from overseas.'
A GoFundMe spokesperson said: 'We are committed to ensuring people like Leni's family can give and receive help safely on our platform. All donations are protected by the GoFundMe Giving Guarantee - the only guarantee of its kind - which means donors can request a refund in the rare case that something isn't right.'
