Parents battle charity for £100k donations to dead son to be spent on terminally ill daughter

Independent

16 hours ago

Parents who lost their nine-year-old son to cancer - only to learn his little sister is also terminally ill - are in a court battle with a charity over £100,000 of donations originally made for him.
Lego-loving Kyle Morrison died in 2020 after being diagnosed with an incurable brain cancer, leaving parents, Craig Evison and Victoria Morrison, behind.
Before his death, wellwishers had donated thousands to pay for treatment in the US and "memory making" experiences for the family, but Covid 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 then 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 beloved Minnie Mouse.
But when they tried to claim almost £100,000 left from the money donated for Kyle, they were told it would not be paid - because Ruby-Rose doesn't have cancer, but instead a different but equally devastating condition.
The parents, of Cheshunt, Herts, are now fighting the charity which holds the money, Gold Geese, at the High Court, saying the money should be spent to benefit their little girl.
However, the charity 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 he was only 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.
He died in October of 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 a devastating illness known as Megdel syndrome, a genetic metabolic condition characterised by high levels of acid in the body, which is usually fatal in early infanthood.
Representing themselves, the couple told the judge that she 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, for the charity, barrister William Moffett said the money can only be used for the purposes it was donated by the wellwishers - children with cancer, and not other diseases.
And a contract which the couple agreed stated that, if the money wasn't 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.
However, he said there was no way donors could have meant for the money to benefit Ruby-Rose, as she wasn't even born at the time that it was pledged.
"Her illness and the desire to assist this family couldn't have informed the donors when they were giving in 2020," he argued.
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."
However, the couple insisted that the contract allows money to be spent for Ruby-Rose's benefit, since they believe she falls into the definition of a "similar" case, as stated in the agreement.
And they said that, although they had agreed the contract, the situation changed when their little girl was also diagnosed with a life-limiting illness.
"This is a mother and a father with a broken heart," said Mr Evison.
"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.
But 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.