Parents who raised £100k for tragic son sue charity after refusing to give them cash for terminal daughter's Disney trip
Craig Evison and Victoria Morrison's nine-year-old son Kyle tragically passed away in 2020 from incurable brain cancer.
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Before his death, well-wishers had donated thousands to pay for treatment in the US and "memory-making" experiences for the family.
But due to Covid lockdown restrictions, Kyle's parents were never able to take him travelling before his death.
Craig and Victoria instead hoped to use the money for his two-year-old sister Ruby-Rose, who has been diagnosed with genetic metabolic disease and may not live past the summer.
They created a Go Fund Me page - under the name "Ruby-Rose's Making Memories Fund" - saying they want to "take our kids travelling across the globe and see and do as many amazing things".
This includes taking Ruby-Rose to Disney in Florida to meet her beloved Minnie Mouse.
But when they tried to claim almost £100,000 left from the appeal money for Kyle, charity Gold Geese said they could not access the cash because Ruby-Rose has a different disease.
Craig and Victoria are now suing the charity at the High Court in London - saying it should be handed over to benefit their daughter.
But the organisation says it cannot pay out because the donations were made for Kyle when he was a cancer patient and can now only be spent on trials for another child in a "similar" situation to him.
The court was told Kyle was diagnosed with a rare cancer - diffuse intrinsic pontine glioma (DPIG) - in 2019 when aged eight.
Attempts to raise money for his treatment and make the most of his time left originally started with a Facebook group before Gold Geese took over the campaign.
The money flooded in and and Kyle was due to go to the US for treatment in late 2020, but Covid prevented his travel and by the time restrictions were eased, he was too ill.
Tragically, the brave youngster died in October that year.
Craig and Victoria went on to have Ruby-Rose in 2022 but were heartbroken to discover she had a condition known as Megdel syndrome.
The disease is characterised by high levels of acid in the body, which is usually fatal in early childhood.
Representing themselves, the couple told the judge their daughter is unlikely to live beyond this summer but is continuing to fight her illness.
They said: "We just want the money to make as many memories as we can."
But barrister William Moffett, representing the charity, said the money could only be used for the purposes it was donated - children with cancer, and not other diseases
He said the couple agreed to a contract that stated that if the money was not spent on Kyle's treatment, it would go to another DIPG trial or the cause of a child in a "similar" position.
The lawyer also argued there was no way donors intended the money for Ruby-Rose as she was not born at the time.
He continued: "Gold Geese is a cancer charity, it's on its logo.
"There are other charities whose objects would include assisting someone with Ruby-Rose's condition, but it wouldn't be proper for Gold Geese to stray outside the illness of child cancer.
"The charity is trying to do what they're legally obliged to do within the ambit of their purpose.
"If the court were to tell us otherwise, they would have authority, but we don't think it's the right answer here.
"It's just an unfortunate fact that Mr Evison and Mrs Morrison have a child who is ill with a different illness."
But the couple insisted the contract allows money to be spent for Ruby-Rose's benefit, since they believe she falls into the definition of a "similar" case.
They also told the court they have continued to highlight childhood cancer and if any of the donors specifically stated they wanted their money to go on research, the couple would not object.
Craig said: "We couldn't predict what was going to happen, we are humans. Kyle sadly passed. His sister Ruby-Rose is in an extremely rare and a very similar situation.
"If she makes it another [month], she has outlived the hospital's expectancy. We are just trying to have that chance to make these memories while there's still time and we physically can."
Deputy Master Marc Glover described the couple as a "courageous family" who had suffered devastatingly bad luck.
He will deliver his judgment at a later date.
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