A CRUEL conman offered false hope to a family battling to save their little boy’s life.
The hoaxer pledged to donate £1million to a drugs trial which could prolong the life of Jack Baird, two, from Ryhope, one of 19 children selected for the scheme.
But when correspondence suddenly stopped between him and the Society for Mucopolysaccharide Diseases (MPS), the charity realised it had been duped.
Jack’s mum Gemma Nelson, 29, branded the stunt “sick” but is determined to continue fund-raising for her son who has the deadly Sanfilippo disease.
Families of children with the rare condition, which causes severe mental and physical deterioration, have teamed up to raise £600,000 to fund the treatment which would prolong their lives.
They believed that they had struck gold when, following TV coverage, one of the mothers received an email and a Facebook friend request from a anonymous potential donor, claiming to be a “self-made man”.
He offered to put up the remaining £500,000 needed to fund the trial, saying: “I’ve got my own kids and it’s what I would want for them.”
The other 18 families were also told about the offer.
“We were so happy,” said Gemma, from Ridgeway, who is also mum to Lewis, nine.
“They said he wanted to remain anonymous so I just assumed it was a celebrity.”
In a series of communications, the “donor” increased his offer to £1million, claimed he was “so moved by the cause” he wanted to support more children suffering with these devastating diseases.
He told the MPS charity that lawyers had been appointed and his bank had been instructed to arrange the donation.
However, after claiming a mix-up had led to a delay in payment, correspondence suddenly stopped.
“I would never have thought someone would be cruel enough to do something like this,” said Gemma. “This makes us more determined to raise the full amount.”
Jack, who was this week awarded a Pride of Wearside award in the Child of Courage category, is one of just 150 children in the UK today with Sanfilippo.
There is no treatment available and those afflicted by the condition are not expected to live beyond their teens.
But drug treatment Genistein is offering the families hope. It has been shown to halt the progression of the disease in preclinical studies but needs to be clinically trialled before it can be prescribed in the UK.
Wearsiders have hosted charity nights, football matches and a sponsored skate.
So far families across the UK, along with Wicked Genes, the fund-raising initiative of MPS, have raised £100,000 for the cause.
A spokeswoman for Wicked Genes said: “Funding for clinical studies in children with ultra-rare diseases appears to be of little interest to major research funding bodies, and so Wicked Genes have taken it in to their own hands to raise the £600,000 needed.”
She added: “The hoaxer maintained his cruel charade for over two weeks, regularly making contact with the charity and promising the money so the clinical trial could start immediately to save these children’s lives.
“Whilst the MPS Society was cautious, it also found it difficult to believe a hoaxer could act so immorally and chose such a vulnerable group of children and their families as his victims. Hopes raised of the clinical trial starting before Christmas have been heartbreakingly dashed.”
The hoax was reported to Thames Valley Police.
Although sympathetic, they said no crime had been committed and they could not take further action.
l If you would like to donate for the Genistein clinical trial, text GENE33 £2/£5/£10 to 70070. Alternatively, visit www.wickedgenes.co.uk to donate, quoting Genistein as your reason for giving.