'Our son, 9, died of brain cancer - now our daughter is fighting to live'

Daily Mirror

2 days ago

Craig Evison and Victoria Morrison tragically lost their nine-year-old son, Kyle, in 2020 and are now fighting for their two-year-old daughter, Ruby-Rose, who could just have months to live
Two heartbroken parents who say they were trolled as their young son died of an incurable brain tumour are facing more heartbreak, with their daughter's heart described as a "ticking time bomb".
Craig Evison and Victoria Morrison have heartlessly been trolled once more as their two-year-old daughter Ruby-Rose battles against the odds to survive. The young girl has Megdel Syndrome, which impacts the body's nervous system, and the family were told she may not live past her third birthday. The grieving parents are still coming to terms with the death of their 'happy', 'very smart' and 'loving' son Kyle in 2020, who bravely battled a brain tumour for a year.
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Before his death a group of family and friends came together to try and raise funds so the nine-year-old could participate in a medical trial in New York, but the Covid-19 pandemic prevented any possible treatment. With around £100,000 raised, the parents now hope to use the money for Kyle's young sister.
As well as paying for medical equipment, they hope to use it to make memories with Ruby, such as take her to Disney in Florida. But when they tried to access the money, charity Gold Geese said they could not release the funds 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 parents have since revealed that they have been subject to online abuse following confusion as to why they were requesting Kyle's donation pot. Craig, 39, told MailOnline: "I don't think the general public understanding how disheartening, and financially draining having a terminally ill child is. We are still recovering from Kyle all these years later. If he needed or wanted anything he got it, because we knew the end result but regardless, we wanted the little life he had left to be the best."
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Victoria added: "Kyle's money is his legacy, as well as doing things with Ruby and our other son that we couldn't do with Kyle because of Covid. It was absolutely heartbreaking because I couldn't even take Kyle to the local park just to do something together. It was the most horrible year of our lives."
Kyle's family were even sent awful messages from trolls while the young boy was dying, with one cruel person messaging Victoria to say they couldn't "wait to smoke on his ashes". Another stranger also demanded they tell Kyle about his condition, despite the family wanting to keep the information from him so he wouldn't be scared. "The abuse we received, and the things said about him and Vicky was horrible, it was disgusting," Craig said.
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A High Court judge will now decide whether the money raised for Kyle can be released to the parents and used for Ruby. Gold Geese argue that the money should only be used for children with cancer, although Craig and Victoria believe Ruby's condition is 'similar' as the disease impacts her nervous system similarly to her late brother.
Craig told The Sun: "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."
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The parents say the £100,000 would go towards paying for Ruby's specialist equipment, clothing, food and physiotherapy. They have set up a GoFundMe page - under the name "Ruby-Rose's Making Memories Fund", in a desperate attempt to raise more funds should they not be successful with their case in the High Court.
Explaining Ruby's condition, Craig said: "Its like your heart only has so many beats. Hers is already a ticking time bomb. [It impacts] her liver, her kidneys, she's also deaf. She struggles with basic mobility functions already. She can't sit up unaided herself. She can't eat normally, she can't maintain body weight. She struggled to get over the 8kg point, she should be a lot heavier."
He added: "I have a saying of its bad enough its happened once with Kyle, but going through it a second time is absolutely dreadful. Parents shouldn't bury their children, your kids should bury you in a sense. Its very hard."
Deputy Master Marc Glover will deliver his judgement in the High Court at a later date.