Latest news with #neuroblastoma
Yahoo
15 hours ago
- Health
- Yahoo
My best friend died at 11 after telling me to live my life for him
Ryan Quinn remembers the first time he met Aaron Murphy, the boy who would become his best friend. He was three and it was his first day at nursery. "After my mum dropped me off, I got very upset. It was the first time that I'd been on my own without her," he said. "As I turned around to go and find her, Aaron was standing behind me. We became inseparable instantly. "We were the closest of friends. We had so much in common. We had a love for Minecraft and for Star Wars." Just months into the friendship between the two boys from Dunfermline, Aaron Murphy was diagnosed with neuroblastoma - a rare form of childhood cancer which develops in nerve tissue and usually affects children under five. After various treatments, Aaron's cancer entered remission. But when he was 10, his cancer returned. He went through further treatment, but there was nothing that could save him. He died three weeks shy of his 12th birthday. Ryan was supposed to visit Aaron in hospital that evening but was picked up from school early. "I was so excited," he said. But the atmosphere in the car on the way home was silent. "When home, my mum sat down next to me and put her arms around me. 'Aaron's gone, Ryan,' she said." Losing a close friend at the age of 11 brought unimaginable grief to Ryan. He was angry at the world and at the disease that took his friend. "I became very reclusive and very depressed," said Ryan. "About three months after Aaron passed away, I started high school, which was hard because it was a massive change. "Suddenly I started this new school where I didn't really know anyone and my best friend wasn't there." On what would have been Aaron's 18th birthday, Ryan has shared what it was like to lose his childhood friend while they were both children themselves. Now 17, Ryan wants to turn his grief into a vehicle for change. "I thought I could put the anger and passion I felt into something - which was campaigning for children's cancer and raising awareness," he told BBC Scotland News. Aaron's last words to his friend were "Live your life for me, Ryan" and that is what he is trying to do. He says he is determined to honour his request. Ryan has undertaken fundraising and lobbying. Last year he did a sky-dive in memory of Aaron to raise money for a charity called the Team Jak Foundation which provides support for families and friends of people affected by cancer. It helped Ryan to deal with his grief and he said he wanted to pay them back. Earlier this year he spoke at the Scottish Labour Party conference. After that he managed to secure a meeting with Scotland's Health Minister Neil Gray who invited him to the Scottish Parliament to discuss the issues that Ryan is highlighting. Mr Gray told Ryan he was committed to improving outcomes for children and young people with cancer. Thoughts turned to Aaron during the meeting. "I thought, 'What would Aaron think of what I'm doing?' "There was one empty chair at the table. "I am confident that Aaron was sat in it, and I hope I did him proud." June is a hard month for Ryan. As he reaches adulthood, he has lots of questions about what happened to his best friend. He said " Recently I bought my first car after passing my driving test and the first thought I had when I put the key into the ignition was 'Why do I get to do this and Aaron doesn't?' And I'm constantly reminded of that as we approach Aaron's 18th birthday." Six years on from Aaron's death, Ryan says he misses his friend more than ever. "I loved Aaron with my whole heart and I always will," he said. "Aaron's death inspired me to be a campaigner so that he and the other children and young people who die from cancer each year are never forgotten. "I want to make sure that Aaron's story gets to the right places and on the right people's desks and I hope that meaningful change will be made." More stories from Edinburgh, Fife & East More stories from Scotland 'Radiographer started crying during my cancer scan'
CTV News
18 hours ago
- Health
- CTV News
Community throws ‘super party' to support 5-year-old Abby's cancer fight
Abby Posie is only five-years-old and she's already facing a battle that most kids her age couldn't even wrap their heads around. After bravely beating cancer once, Abby is now fighting neuroblastoma for a second time. (Supplied) Abby Posie is only five-years-old yet she's already facing a battle that most kids her age couldn't even wrap their heads around. After bravely beating cancer once, this special soul is now fighting neuroblastoma for a second time. Neuroblastoma is a rare childhood cancer tumor that develops from nerve cells called neuroblasts. It is most commonly diagnosed in young children under the age of five. The local community is stepping up to help support Abby along her courageous battle, 'We want to rally around her and her family, try to build some community, some support because it has a positive impact on outcomes and we believe Abby deserves the best possible outcome,' shared Christine Gordon, operations manager of The 705 Recovery Community Centre. This Saturday, from 2 p.m. to 5 p.m., the community centre will host 'Abby's Super Party' a superhero-themed family fundraiser packed with activities and entertainment. The special celebration takes place at The 705 Recovery Community Centre, located at 56 Dunlop Street West. Attendees can enjoy a community BBQ, games, face painting, and live music. Everyone is encouraged to dress as their favourite superhero. All proceeds from the event will go directly towards Abby's family, helping them with the high costs of countless travel hours, and time away from work as they continue to conquer trips to Toronto's SickKids Hospital for her treatment. With the community's support Abby and her family won't have to face this journey alone, 'Abby is a real-life superhero,' says organizers. 'Now it's time for the rest of us to be hers.' To show your support for little Abby, click here.
BBC News
18 hours ago
- Health
- BBC News
My best friend died at 11 after telling me to live life for him
Ryan Quinn remembers the first time he met Aaron Murphy, the boy who would become his best friend. He was three and it was his first day at nursery."After my mum dropped me off, I got very upset. It was the first time that I'd been on my own without her," he said."As I turned around to go and find her, Aaron was standing behind me. We became inseparable instantly."We were the closest of friends. We had so much in common. We had a love for Minecraft and for Star Wars." Just months into the friendship between the two boys from Dunfermline, Aaron Murphy was diagnosed with neuroblastoma - a rare form of childhood cancer which develops in nerve tissue and usually affects children under various treatments, Aaron's cancer entered remission. But when he was 10, his cancer went through further treatment, but there was nothing that could save died three weeks shy of his 12th birthday. Ryan was supposed to visit Aaron in hospital that evening but was picked up from school early."I was so excited," he said. But the atmosphere in the car on the way home was silent."When home, my mum sat down next to me and put her arms around me. 'Aaron's gone, Ryan,' she said." Losing a close friend at the age of 11 brought unimaginable grief to was angry at the world and at the disease that took his friend."I became very reclusive and very depressed," said Ryan."About three months after Aaron passed away, I started high school, which was hard because it was a massive change. "Suddenly I started this new school where I didn't really know anyone and my best friend wasn't there." On what would have been Aaron's 18th birthday, Ryan has shared what it was like to lose his childhood friend while they were both children 17, Ryan wants to turn his grief into a vehicle for change."I thought I could put the anger and passion I felt into something - which was campaigning for children's cancer and raising awareness," he told BBC Scotland News. Delayed cancer diagnosis Aaron's last words to his friend were "Live your life for me, Ryan" and that is what he is trying to says he is determined to honour his request. Ryan has undertaken fundraising and year he did a sky-dive in memory of Aaron to raise money for a charity called the Team Jak Foundation which provides support for families and friends of people affected by helped Ryan to deal with his grief and he said he wanted to pay them this year he spoke at the Scottish Labour Party that he managed to secure a meeting with Scotland's Health Minister Neil Gray who invited him to the Scottish Parliament to discuss the issues that Ryan is Gray told Ryan he was committed to improving outcomes for children and young people with cancer. Thoughts turned to Aaron during the meeting."I thought, 'What would Aaron think of what I'm doing?'"There was one empty chair at the table."I am confident that Aaron was sat in it, and I hope I did him proud."June is a hard month for Ryan. As he reaches adulthood, he has lots of questions about what happened to his best said " Recently I bought my first car after passing my driving test and the first thought I had when I put the key into the ignition was 'Why do I get to do this and Aaron doesn't?' And I'm constantly reminded of that as we approach Aaron's 18th birthday."Six years on from Aaron's death, Ryan says he misses his friend more than ever."I loved Aaron with my whole heart and I always will," he said."Aaron's death inspired me to be a campaigner so that he and the other children and young people who die from cancer each year are never forgotten. "I want to make sure that Aaron's story gets to the right places and on the right people's desks and I hope that meaningful change will be made."
CBS News
a day ago
- Health
- CBS News
Alex's Lemonade Stand Foundation funding research for newborn screening for genetic predisposition to cancer
Alex's Lemonade Stand Foundation aims to cure the incurable, and its Crazy 8 Initiative supports research into the most challenging problems in childhood cancers. This year, two major projects could be game changers and even lifesavers. You probably remember Cole Fitzgerald's smile, a friend of ours at CBS Philadelphia and a cancer hero of the Alex's Lemonade Stand Foundation who passed away in 2023. Fitzgerald had neuroblastoma as a child and was cancer-free for 15 years when he was diagnosed with metastatic pancreatoblastoma. His parents say they learned during his final fight that he had a genetic predisposition to cancer. "That's when they discovered that he had [Li-Fraumeni syndrome], which meant that one of us potentially passed it on to him," Karen Fitzgerald said. "It is a genetic predisposition where a particular gene called the TP53, which is in normal DNA, is a tumor suppressor. And in people that have LFS that tumor suppressor does not function." "Probably around 10% of children develop cancer because they have a genetic risk for cancer," said Dr. Lisa Diller, a pediatric oncologist at the Dana-Farber Cancer Institute and Boston Children's Hospital. "Well, there are some genes that we can find in children that tell us that a child is at risk for cancer," Diller said, "and then we can do screening and find it early. And maybe use very minimal therapy to cure that child so they don't need chemotherapy, they don't need radiation, or we increase their chance of being cured." The testing would be part of routine heel stick blood tests on newborns. "We pick up children at risk for cystic fibrosis and for a variety of rare genetic disorders," Dr. Sharon Plon, the chief of the cancer genetics clinic at Texas Children's Hospital, said. "And we're able to treat them or do surveillance. But we've never done that for cancer." If a genetic risk of cancer is found, children would be screened regularly through childhood and into adulthood. "Cole would have had a different level of surveillance after his first incident rate of cancer," Karen Fitzgerald said. "When you're getting yearly MRIs of the brain and the body and all the additional blood testing as well." Although Karen Fitzgerald learned that she and other family members also have the genetic predisposition, she and her husband considered it a last gift from Cole. Another group of researchers is working on vaccines. The Crazy 8 Initiative allows researchers to take risks — risks that are necessary to find treatments, cures, and hopefully, vaccinations. "I don't think this would be possible to get funded through any other traditional mechanism that I've heard of," Dr. David Malkin with the Hospital for Sick Children and the University of Toronto said. "The Alex's Crazy 8 grant is going to get us to the point that this is actually can be something that can be something that can be in clinical trials in children." "It's too late for Cole, but to see these grants and what they're doing and the possibility to save others that have the same predisposition," Bill Fitzgerald said. "He would be thrilled, delighted," Karen Fitzgerald. "He would say, let's go."
Telegraph
2 days ago
- Health
- Telegraph
The hidden financial nightmare when your child is critically ill
Menai-Davis set up It's Never You, a charity that provides support to families facing long hospital stays, after the 'financially inhumane' circumstances his family found themselves in while trying to care for Hugh. Every day, he says he speaks to 'parents [who] are struggling because they have to repay back debts on credit cards that they've taken out to cover that first initial hit of being away from work – they're losing their jobs, they're having to sell homes, they're having to sell clothes'. Some parents have to rely on food banks, or miss meals to ensure that their children can eat. Others turn to crowdfunding in the absence of any financial help, although receiving over £16,000 this way invalidates eligibility for universal credit. 'The last thing you are thinking about is how to pay the mortgage' It is the constant unknowns – whether their child might respond to treatment, and when – that adds to the enormity of families' financial burden. Ashley Smith* has spent the first two years of her daughter's life in and out of hospital following her diagnosis with neuroblastoma, a condition that has at times required chemotherapy, five-hour trips for treatment and 12 types of medication to be administered eight times a day. 'I had to get a loan. I couldn't afford to just pay,' Smith says of the endless costs, which hit £18,000 during one period of treatment alone. These often require relocation to be close to a specialist hospital, leaving many parents paying rental costs on top of their mortgage. For single parents like Smith, who receive no financial support from their former partners, these mount up even quicker. To cope with the mental load of dealing with her daughter's illness, she went from full-time work to part-time to fit in with her care. 'I pick up extra hours where I can, and I work at night just to try and pay off the debt that I've got,' she says. Smith is also repaying a loan from her parents. The financial implications have repeatedly left her in a state of 'sheer fear – it's a really scary place to be', she admits. 'You're going through the absolute worst. You're holding a baby that is lifeless, and the last thing you want to be thinking about is: 'Can I make the mortgage this month?'' She says that the last resort, should things reach that point, will be selling their home. Menai-Davis hopes that this week's meeting finally marks the turning point for struggling families. He notes that on becoming Prime Minister, Sir Keir Starmer promised to back workers who, 'if things go wrong, might need a little bit of help. That's exactly what we're asking for now'.
