Latest news with #MegdelSyndrome
Daily Mirror
6 days ago
- Daily Mirror
'Our son, 9, died of brain cancer - now our daughter is fighting to live'
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. 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." 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. 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." 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.
Daily Mail
6 days ago
- Health
- Daily Mail
EXCLUSIVE We were trolled when our boy died of cancer and again now our daughter is dying... all we want is to make her last months bearable using £100k raised for our son but charity won't let us
Two grieving parents, who were heartlessly trolled online as their 'loving' nine-year-old boy died of an incurable brain tumour, have been at the receiving end of abuse once again as their little girl faces her final months. Craig Evison and Victoria Morrison's 'world broke down' when their 'happy', 'very smart' and 'loving' boy Ryan was diagnosed with brain cancer, which eventually left him unable to eat, walk straight or even smile. Before the young boy's death in 2020, a group of family and friends came together under the name Kyle's Army, in a bid to raise thousands so he could participate in a medical trial in New York for his condition. But after being taken aback by the generosity of the community as well as strangers, who raised around £100,000, the grieving parents were delivered another devastating blow; COVID-19 restrictions preventing their travel to the US. In 2020, brave Kyle passed away after a year of fighting the rare brain tumour, but two years later, the family were delivered good news - Victoria, 36, was pregnant with the couple's first baby girl, Ruby-Rose. But their baby bliss was short-lived as the beginning of Ruby's life was plagued with medical issues, from being born at 36 weeks to NICU stays until she was diagnosed with a life-limiting disease, known as Megdel Syndrome. And now, they hope a High Court judge will allow for funds raised for Kyle, currently held by childhood cancer charity Gold Geese, to be used for Ruby to give her the best quality of life in the months she has left. Amid their turmoil the heartbroken parents have revealed they have been subject to online abuse following confusion as to why they were requesting Kyle's donation pot, which they maintain is to help for their daughter's care. 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.' Victoria added: 'He did say, "What have I done to deserve this fantastic life", without knowing [about his condition], bless him. '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. She added: '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.' However, this isn't the first time the couple have been abused online as trolls heartlessly sent vile messages while Kyle was dying from cancer, with one cruel user messaging Victoria how they couldn't 'wait to smoke on his ashes'. Craig also shared that a stranger messaged his partner demanding to tell Kyle about his condition, despite medical staff respecting the parents' decision 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,' he said. 'As a family we decided that the cancer word wasn't going to be mentioned to him, because kids aren't silly they know how to use Google, and he was a very smart child.' The engineer added: 'I will give the hospital their due, they respected our decision.' The parents are now waiting for an outcome over Kyle's donations, as both they and Gold Geese, a charity holding the funds raised by Kyle's Army, have decided to let a High Court judge decide if the money is to be released to the parents. A contract the couple signed stated 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, the London High Court court previously heard. However, the couple representing themselves legally while juggling the care of their daughter who is at the end of her life, argued Ruby's condition is 'similar' as the disease impacts her nervous system similarly to her late brother. In 2019 Kyle was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a rare brain cancer which impacts the brain stem, thus affecting the nervous system as well as other vital functions such as breathing, muscles, hearing, walking, talking and more. Currently, two-year-old Ruby suffers from a a rare genetic metabolic condition characterised by high levels of acid in the body, known as Megdel Syndrome, which also impacts the body's nervous system. It is usually fatal in early infanthood. 'Its like your heart only has so many beats. Hers is already a ticking time bomb,' Craig explained. '[It impacts] her liver, her kidneys, she's also deaf. She struggles with basic mobility functions already. Victoria Morrison is seen here with her son Kyle who tragically died aged nine in 2020 '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.' 'There is no definitive answer as to what is going to happen. We were told if she lives past her third birthday, which is a month today, she's done well.' 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.' Craig and Victoria explained the £100,000 would go towards helping them pay for Ruby's specialist equipment, clothing, food and physiotherapy. The family have also set up a GoFundMe page - under the name 'Ruby-Rose's Making Memories Fund', so they can create memories in her final months. 'I don't want [Ruby] to struggle,' Victoria said. Currently the couple have to spend thousands on Ruby's care, which coupled with travel bills and incoming medical equipment, is set to send their monthly bills soaring. Among the essential items the young tot requires to help support her posture is a P-pod, which costs around £1,300 and has to be moulded to her growing body. While some of this cost is covered by the NHS, the parents will have to cover seat replacements at £300 to £400 a go, likely at a weekly basis due to her sickness. 'As soon as something is labelled a disability item the price just goes through the roof,' Craig said. 'We do get help from the NHS, which we are grateful for, but it only stretches so far.' 'I physically can't afford to not work, it's a struggle especially if Ruby is ill because we have our other son at home as well.' They have also argued Ruby is 'suffering' from not having physiotherapy appointments. However going private would mean seeking a specialist medical practitioner who could meet her needs, which the grieving couple believe would 'cost a fortune'. 'It will help improve her life and what is left of it,' Craig said of Kyle's £100,000 donation pot. 'Ruby is different in a lot of ways but in principal she is the same, and that's a bitter pill to swallow as a parent. Not once but twice.'
