Craig Evison and Victoria Morrison’s son Kyle died in October 2020 from a rare childhood brain cancer, in 2022 their daughter Ruby-Rose was diagnosed with a genetic metabolic disease
A judge has ruled that the parents of a nine-year-old boy who died of cancer are not allowed to use £100,000 in charity donations to take his terminally-ill sister to Disney World.
Craig Evison and Victoria Morrison’s son Kyle died in October 2020 after being diagnosed with a rare and incurable form of childhood brain cancer.
Tens of thousands were raised from wellwishers who donated to pay for Kyle to get treated in America. However Covid lockdowns stopped travel and by the time restrictions had eased little Kyle was too sick to make the trip.
The bereaved couple, from Cheshunt in Hertfordshire, went on to have a daughter, Ruby-Rose, in 2022. But they were heartbroken when they learned that she too was suffering from a terminal illness.
Ruby-Rose, they were told, had a genetic metabolic disease, and was unlikely to live beyond this year. The parents launched a new fundraiser, with the aim of covering Ruby-Rose’s treatment and taking her to Walt Disney World in Orlando, Florida, to meet Minnie Mouse.
However they were told that the almost-£100,000 donated to help Kyle – through children’ s cancer charity Gold Geese – could not now be handed over to help their daughter.
Gold Geese said it couldn’t give the money over because Ruby-Rose does not have cancer – saying donors expected the funds to go towards Kyle or other children with the condition.
The fight went to the High Court, which ruled in favour of Gold Geese, meaning the money cannot be spent on Ruby-Rose. Deputy Master Marc Glover ruled it will instead be split between two charities which support people with the type of cancer that Kyle had.
Ruby-Rose suffers from a devastating illness called MEGDEL syndrome which sees high levels of acid in the body and is usually fatal in early infanthood.
Representing themselves before the judge, Ms Morrison said: “We just want the money to make as many memories as we can.”
However the barrister representing Gold Geese, William Moffett, said the couple had agreed to a contract that stated the money would be spent on a DIPG trial or a child in a ‘similar’ position if it was not spent on Kyle’s treatment.
He said the charity was doing what it was “legally obliged” to do. The couple argued that Ruby-Rose fell into the definition of a ‘similar’ case.
“The majority of the public wants us to have the money,” Ms Morrison said at the hearing earlier this week, showing letters, emails and messages from supporters.
The judge said that although “all parties’ ambitions for the fund are decent and honourable,” he ruled that donors intended the money to go to DIPG sufferers or research into the disease.
He added: “This judgment will come as a disappointment to Victoria and Craig. No person can help but be moved by their experience and the tragic loss of Kyle.”
A spokesperson for Gold Geese told the Daily Mail: ”Gold Geese thanks the Court for its careful judgment. This has been a really tough time for the Morrison family, and our hearts go out to them.
“We recognise how disappointing this outcome is, but we must comply with the Court’s ruling that the funds are to be used to support children with childhood cancer or to fund research. Gold Geese remains committed to doing everything we can to support children and families affected by childhood cancer in our area.”