Tragic parents who lost their son aged nine to cancer before learning his younger sister is also terminally ill are now suing a charity over donations worth £100,000.
Craig Evison and Victoria Morrison, whose son Kyle died in 2020 from an incurable brain cancer, want to take his sister Ruby-Rose to Disney World – but have been told they cannot access previous cash pledges because she has a different disease.
Before Kyle’s death, wellwishers had donated thousands to pay for treatment in the US and ‘memory making’ experiences for the family – but Covid-19 pandemic lockdown restrictions intervened and he never travelled.
The couple went on to have a daughter Ruby-Rose, now two, but were devastated to learn that she too was seriously ill with a genetic metabolic disease and was unlikely to live beyond this summer.
They began a GoFundMe page – under the name ‘Ruby-Rose’s Making Memories Fund’ – in an attempt to take her to Disney in Florida to meet her favourite character Minnie Mouse.
But when they tried to claim almost £100,000 left from appeal money earlier donated for Kyle, they were told it would not be paid, London’s High Court was told.
The reason given was said to be Ruby-Rose not having cancer but instead a different albeit equally devastating condition.
The parents, from Cheshunt in Hertfordshire, are now battling the charity Gold Geese that holds the money, 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 or another child in a ‘similar’ situation to him.
In a day-long trial, judge Deputy Master Marc Glover was told how 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 to help him make the most of his days began with a Facebook campaign through the group One Pound Warriors, which encourages donors to give small but regular sums to charitable causes.
However, the group then passed on Kyle’s cause to Essex-based Gold Geese, a charity which works for the benefit of cancer-stricken children.
The money flooded in 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 and he then died in October that year.
The grieving couple, who also have another son, then went on to have their daughter Ruby-Rose in 2022, but she too was diagnosed with Megdel syndrome.
That is a genetic metabolic condition characterised by high levels of acid in the body and which is usually fatal in early infanthood.
Representing themselves, the couple told the judge that Ruby-Rose was unlikely to live beyond this summer but is continuing to fight her illness.
Telling Deputy Master Glover that they believe the money raised for Kyle should now go to their daughter, Mrs Morrison said: ‘We just want the money to make as many memories as we can.’
However, the charity’s barrister William Moffett said the money could only be used for the purposes for which it was donated by the wellwishers – that is, children with cancer rather than other diseases.
He also told of a contract the couple agreed stating that, if the money was not spent on their son’s treatment before he died, it would go to another DIPG trial or the cause of a child in a ‘similar’ position.
Mr Moffett said there was no way donors could have meant for the money to benefit Ruby-Rose, because she had not been born at the time the donations were pledged.
He told the court: ‘Her illness and the desire to assist this family couldn’t have informed the donors when they were giving in 2020.
‘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.’
However, the couple insisted the contract should permit money to be spent for Ruby-Rose’s benefit, since they believe she falls into the definition of a ‘similar’ case.
And they said that, although they had agreed the contract, the situation changed when their daughter was also diagnosed with a life-limiting illness.
Mr Evison said: ‘This is a mother and a father with a broken heart. We are five years down the line now. Things have totally changed. The world has changed in a harsh way.
‘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.’
He also said that he continues to promote the cause of childhood cancer and that, if any of the donors had specifically stated they wanted their money to go on research, the couple would not object.
During a day of argument in a hearing conducted via a video link, the judge described Mr Evison and Mrs Morrison as a ‘courageous family’ who had suffered devastatingly bad luck.
He added: ‘Part of the court’s function is to ascertain the intention of the donors. The numbers are large. There are at least 1,300 different payers.
‘Was it an intention that it should go to a charity for people other than your son Kyle or was it that it should go to Kyle so that on his passing it would go to you to use as you like, including in relation to Ruby?’
Judgment on whether the money can be spent on Ruby-Rose will be delivered at a later date.
