Latest news with #SUDC
The Sun
08-07-2025
- Health
- The Sun
Baby girl found ‘stiff and blue' after fatal condition struck in the night – heartbroken parents say ‘world fell apart'
HEARTBROKEN parents say their "world fell apart overnight" when they woke to find their 14-month-old baby girl had passed away during the night. It was a morning like any other for Enya Burgess, 29, and Scott Stanley, 28, when they went to wake their "cheeky" young daughter, Lily-Anne, on May 7 this year. 10 10 But they realised with alarm she was 'stiff' and 'blue'. The couple frantically called for an ambulance but Lily-Anne was sadly pronounced dead. It was later determined that the tot had died of Sudden Unexplained Death in Childhood (SUDC), leaving her parents with 'no answers'. Enya, a customer service advisor, recalled: 'It was just a normal Tuesday for us, and the next day our world fell apart, just overnight. 'Tomorrow isn't guaranteed, cherish every moment you can." The parents - who've been a couple for three and a half years - described Lily-Anne as 'very loving and very cheeky'. 'She was very caring and she liked to share a lot, she had a big heart,' Scott said. The tot had had no previous health issues. Scott, an asbestos consultant, said it was a morning like any other on May 7 when he got up for work. 'I went downstairs, made [Lily-Anne's] milk and I went to get her up and ready for nursery. Sudden Unexplained Death in Childhood explained "She was stiff on her front and she was blue,' Scott said, becoming emotional. The couple called an ambulance while Enya ran out of the house to shout for help. One of their neighbours, an off-duty police officer, was able to start administering CPR to Lily-Anne. Enya said it was 'craziness' as both police officers and an ambulance arrived at once, before it was confirmed Lily-Anne had died in her sleep at 14 months. 10 Lily-Anne was taken to King's Mill Hospital in Nottinghamshire for further checks while Enya and Scott followed behind – but they claim they had to sit in the A&E waiting room following their very recent loss. 'It was mayhem – we were sat there for a good half-hour, sitting around other people, wondering what the hell is happening,' Enya said. The couple said they were then met by doctors before being taken into a side room and questioned about Lily-Anne's health. 'They did some initial checks on her and confirmed there were no signs of struggle, that there was no obvious reason as to why she had passed,' Enya said. From there, Enya claims she and Scott were moved to another room located 'right next to' the children's A&E waiting room. 'It was literally just a dingy, dark room behind some toilets, and we could hear everything going on,' Enya said. 'We were in shock, it was triggering in a way considering what we were going through.' 10 Over the subsequent days, Enya and Scott wanted to 'spend as much time with Lily-Anne as possible' while she was in the hospital mortuary. The couple claim they were not offered any counselling or support from a dedicated bereavement team at King's Mill Hospital and there was not a specific area onsite where they could process their loss privately. They also claim that while bereavement support is on offer at the hospital, it is only for those where a child has died under a certain age – and Lily-Anne was too old for them to receive this service. Enya and Scott said they were 'lucky' however to have some support from an A&E nurse and a Chaplain at the hospital, who were able to accompany the couple to the mortuary and help them through their difficult time – often staying late outside their working hours to do so. 'We've lost our daughter but fortunately, we had two good people there to help us,' Scott said. 'Not every family is going to get that and without them we would have had nothing – we were just lucky.' What is Sudden Unexplained Death in Childhood (SUDC)? SUDC is the unexpected death of a child aged between 1-18 years that remains unexplained after a thorough case investigation is conducted. This must include; examination of the death scene, performance of a complete post-mortem, and a review of the child and family's medical history Around 40 children are affected every year in the UK, often going to sleep and never waking up. At this time, no-one can predict or prevent these deaths; neither parents nor medical professionals. It's not known why exactly they occur. Sudden Unexplained Death In Childhood is the fourth leading category of death for children aged one to four years. Source: SUDC UK The experience was eye-opening for the couple, prompting them to launch a GoFundMe page to raise money to improve bereavement services at the hospital, to help other families through the 'unthinkable'. 'We want to make these changes to create a lasting legacy for Lily-Anne and to help other parents and families when they are going through the unthinkable.' Scott added: 'Every hospital should have these services on offer for when you lose a child. 'You need help and support to process the news, and a private place to do so.' On May 19, Lily-Anne was transported to Great Ormond Street Hospital for Children in London where a post-mortem examination was conducted. On June 23, the baby's death was officially ruled as SUDC. Around 40 children are affected every year by SUDC in the UK, often going to sleep and never waking up, according to SUDC UK, a charity dedicated to research and support. Enya, Scott and their loved ones held a funeral for Lily-Anne on June 6 – although they say they have not processed her death. 'It's hard because we don't have an answer, there was no reason why she died,' Enya said. 10 The couple's GoFundMe - which aims to enlist a bereavement support team for all at King's Mill Hospital and create a dedicated bereavement suite at the site – has raised over £2,000 so far with a target of £10,000. 'My goal is to get this support in place to help other families in the future,' Enya said. Dr Simon Roe, Chief Medical Officer at Sherwood Forest Hospitals, said: 'On behalf of the Trust, I want to express my sincere condolences to Lily-Anne's family at this incredibly difficult time. 'While we have a dedicated Bereavement team and plans in place to assist staff in providing advice, guidance and memory-making opportunities to families who have experienced a bereavement, the team doesn't provide ongoing support such as counselling. 'Like other Trusts across the country, bereaved families are signposted to local and national organisations for advice and support. 'We are committed to improving our services and continue to work with our local and regional partners to consider potential developments in relation to bereavement support. 'We are grateful to Lily-Anne's family for wanting to improve others' experiences during what is a distressing time for them and we will continue to work with them to find a suitable way to support our bereavement services as a lasting legacy for their daughter.' You can visit Enya and Scott's GoFundMe page here.
Yahoo
09-05-2025
- Health
- Yahoo
Dad running ultra-marathon for 'special angel'
A former professional rugby player is set to run an ultra-marathon in memory of his "angel" daughter who died suddenly at two years old. Bristol Bears coach Glen Townson, who played for the team before his retirement, will run 44 miles from Ashton Gate to the Principality Stadium in Cardiff to deliver the match-day ball for the Bears v Bath game on Saturday. He and three friends are raising money for the Amber Townson Foundation, set up in memory of his daughter Amber who died in August 2023 of Sudden Unexplained Death in Childhood (SUDC). "When it initially happens, you're all over the place. You think 'Why you? How has this happened to us?'," Mr Townson told the BBC. "I definitely feel like [preparing for] an endurance race allows you that thinking time and come to terms with it." SUDC is the unexpected death of a child aged between one and 18 that remains unexplained, and affects about 40 children every year in the UK. Amber, Mr Townson said, was a "cheeky" two-year-old, "a bit of an entertainer" and a "loving, caring little girl" who idolised her older sister. Mr Townson said the day before she died was "just a normal day", and when she appeared to have slept later than usual the following morning, the family "thought nothing too much of it". But when Mr Townson went in to wake her, he immediately realised something was wrong. "She just wasn't responsive, she was so cold," he said. Despite immediately carrying out cardiopulmonary resuscitation (CPR), and the further efforts of paramedics who rushed to the scene, Amber could not be revived. "She wasn't ill. We hadn't recognised anything. And at that point in time it was just pure shock, really, of like 'what's going on?'," Mr Townson said. The family were rushed to Bristol Royal Hospital for Children, where they met with specialists to try to understand what could have happened to Amber. "We were like 'well surely there has to be a cause, there has to be. She can't just die'," Mr Townson said. The family had never heard of SUDC and had been shocked to find out one in four childhood deaths are counted with such a cause. It was the confirmation of this, months after Amber's death, that led he and his wife Tara setting up the foundation with the aim of supporting other families as well as promoting research into similar deaths. "It will never bring your child back, but it will hopefully maybe help parents come to terms with what it is," Mr Townson said. While the diagnosis of SUDC had been hard to come to terms with, he explained it left room for an "element of hope" that perhaps there would one day be answers. "We've had the option to keep tissue samples of Amber, so if in 10, 20 years time new developments happen they actually could run tests on those and have some more answers," he said. Looking toward the run on Saturday, Mr Townson said he felt a "a combination of excitement and a little bit of nerves as well, just with the sheer scale of the challenge". "I'm certainly not built for long distance running," he joked, but added the prospect of an ultra-marathon was dwarfed by what he and his family had already been through. "Having this purpose of helping others has has helped us navigate our way through," he said. Follow BBC Bristol on Facebook, X and Instagram. Send your story ideas to us on email or via WhatsApp on 0800 313 4630. Parents of sudden-death children 'let down by NHS' 'We deserve answers as to why our children died' 'No-one can tell me why my son died in his sleep' Amber Townson Foundation Bristol Bears
Yahoo
09-05-2025
- Health
- Yahoo
Dad running ultra-marathon for 'special angel'
A former professional rugby player is set to run an ultra-marathon in memory of his "angel" daughter who died suddenly at two years old. Bristol Bears coach Glen Townson, who played for the team before his retirement, will run 44 miles from Ashton Gate to the Principality Stadium in Cardiff to deliver the match-day ball for the Bears v Bath game on Saturday. He and three friends are raising money for the Amber Townson Foundation, set up in memory of his daughter Amber who died in August 2023 of Sudden Unexplained Death in Childhood (SUDC). "When it initially happens, you're all over the place. You think 'Why you? How has this happened to us?'," Mr Townson told the BBC. "I definitely feel like [preparing for] an endurance race allows you that thinking time and come to terms with it." SUDC is the unexpected death of a child aged between one and 18 that remains unexplained, and affects about 40 children every year in the UK. Amber, Mr Townson said, was a "cheeky" two-year-old, "a bit of an entertainer" and a "loving, caring little girl" who idolised her older sister. Mr Townson said the day before she died was "just a normal day", and when she appeared to have slept later than usual the following morning, the family "thought nothing too much of it". But when Mr Townson went in to wake her, he immediately realised something was wrong. "She just wasn't responsive, she was so cold," he said. Despite immediately carrying out cardiopulmonary resuscitation (CPR), and the further efforts of paramedics who rushed to the scene, Amber could not be revived. "She wasn't ill. We hadn't recognised anything. And at that point in time it was just pure shock, really, of like 'what's going on?'," Mr Townson said. The family were rushed to Bristol Royal Hospital for Children, where they met with specialists to try to understand what could have happened to Amber. "We were like 'well surely there has to be a cause, there has to be. She can't just die'," Mr Townson said. The family had never heard of SUDC and had been shocked to find out one in four childhood deaths are counted with such a cause. It was the confirmation of this, months after Amber's death, that led he and his wife Tara setting up the foundation with the aim of supporting other families as well as promoting research into similar deaths. "It will never bring your child back, but it will hopefully maybe help parents come to terms with what it is," Mr Townson said. While the diagnosis of SUDC had been hard to come to terms with, he explained it left room for an "element of hope" that perhaps there would one day be answers. "We've had the option to keep tissue samples of Amber, so if in 10, 20 years time new developments happen they actually could run tests on those and have some more answers," he said. Looking toward the run on Saturday, Mr Townson said he felt a "a combination of excitement and a little bit of nerves as well, just with the sheer scale of the challenge". "I'm certainly not built for long distance running," he joked, but added the prospect of an ultra-marathon was dwarfed by what he and his family had already been through. "Having this purpose of helping others has has helped us navigate our way through," he said. Follow BBC Bristol on Facebook, X and Instagram. Send your story ideas to us on email or via WhatsApp on 0800 313 4630. Parents of sudden-death children 'let down by NHS' 'We deserve answers as to why our children died' 'No-one can tell me why my son died in his sleep' Amber Townson Foundation Bristol Bears
BBC News
09-05-2025
- Health
- BBC News
SUDC: Ex-rugby player running ultra-marathon for 'angel' daughter
A former professional rugby player is set to run an ultra-marathon in memory of his "angel" daughter who died suddenly at two years old. Bristol Bears coach Glen Townson, who played for the team before his retirement, will run 44 miles from Ashton Gate to the Principality Stadium in Cardiff to deliver the match-day ball for the Bears v Bath game on and three friends are raising money for the Amber Townson Foundation, set up in memory of his daughter Amber who died in August 2023 of Sudden Unexplained Death in Childhood (SUDC)."When it initially happens, you're all over the place. You think 'Why you? How has this happened to us?'," Mr Townson told the BBC. "I definitely feel like [preparing for] an endurance race allows you that thinking time and come to terms with it."SUDC is the unexpected death of a child aged between one and 18 that remains unexplained, and affects about 40 children every year in the UK. 'Just a normal day' Amber, Mr Townson said, was a "cheeky" two-year-old, "a bit of an entertainer" and a "loving, caring little girl" who idolised her older Townson said the day before she died was "just a normal day", and when she appeared to have slept later than usual the following morning, the family "thought nothing too much of it".But when Mr Townson went in to wake her, he immediately realised something was wrong. "She just wasn't responsive, she was so cold," he said. Despite immediately carrying out cardiopulmonary resuscitation (CPR), and the further efforts of paramedics who rushed to the scene, Amber could not be revived."She wasn't ill. We hadn't recognised anything. And at that point in time it was just pure shock, really, of like 'what's going on?'," Mr Townson said. The family were rushed to Bristol Royal Hospital for Children, where they met with specialists to try to understand what could have happened to Amber. "We were like 'well surely there has to be a cause, there has to be. She can't just die'," Mr Townson said. The family had never heard of SUDC and had been shocked to find out one in four childhood deaths are counted with such a cause. It was the confirmation of this, months after Amber's death, that led he and his wife Tara setting up the foundation with the aim of supporting other families as well as promoting research into similar deaths. "It will never bring your child back, but it will hopefully maybe help parents come to terms with what it is," Mr Townson said. While the diagnosis of SUDC had been hard to come to terms with, he explained it left room for an "element of hope" that perhaps there would one day be answers. "We've had the option to keep tissue samples of Amber, so if in 10, 20 years time new developments happen they actually could run tests on those and have some more answers," he said. Looking toward the run on Saturday, Mr Townson said he felt a "a combination of excitement and a little bit of nerves as well, just with the sheer scale of the challenge". "I'm certainly not built for long distance running," he joked, but added the prospect of an ultra-marathon was dwarfed by what he and his family had already been through. "Having this purpose of helping others has has helped us navigate our way through," he said.
Yahoo
08-05-2025
- Health
- Yahoo
Austin brothers to bike over 5,000 miles to raise funds for charity
AUSTIN (KXAN) — Austin Mayor Kirk Watson declared May 5 as Jenkins Brothers' Bike Day in honor of Bobby and Raleigh Jenkins upcoming 5,500-mile bike ride from Anchorage, Alaska to College Station, Texas. Bobby Jenkins is the owner of ABC Home & Commercial Services, a local business that provides pest control, air conditioning repair and other services for homeowners. The trip will be the second cross-country bike ride the business owner has embarked on with his brother Raleigh. Bobby said he's riding to raise awareness and donations for Sudden Unexplained Death in Childhood (SUDC). His grandson Moss died from SUDC in 2014, and Moss' parents established the Moss Pieratt foundation to raise awareness for SUDC. Bobby Jenkins also ran the New York City marathon in Moss' honor in 2022. Raleigh Jenkins is riding to raise aid funding for children in Haiti, a country that has suffered widespread gang-violence and famine in recent years. The Jenkins brothers joined KXAN Anchor Will Dupree in the studio to discuss the upcoming journey and the funds they hope to raise for two children's charities. Read a transcription of the interview below, or watch in the video player above. Some responses have been edited for clarity. Will DuPree: Thank you both so much for being here. We appreciate it. Bobby Jenkins: Thank you. Appreciate the opportunity. Dupree: Now that is a very long way, 5,500 miles, so talk to us about what inspired that. Bobby Jenkins: Yeah, you know, for both of us and for me, it is about you mentioned my grandson, Moss. Moss passed away 11 years ago from what's called sudden unexplained death in childhood, which means we don't know why he died. It's unexplained, and this is the number four cause of death for toddlers, so it's important, but we want to find answers. And the reason we want to find answers is not just about what happened to Moss, but can we prevent it from happening to other children? And then Raleigh's riding for Mission Lazarus. Raleigh Jenkins: Children in Haiti and their survival that they're going through right now, and the struggles they're doing. DuPree: So this will be essentially a dual fundraiser with a very personal connection for you all. Bobby Jenkins: Absolutely, we've done this before. It was eight years ago. We rode from Seattle to New York City. That was 3,500 miles. This is, as you said, 5,500 miles, and we're eight years older, but the cause is so important to us, and I really particularly on the funding of the research at NYU Langone. We've got to find answers. We've got to raise awareness. We've got to find answers. So we're both very passionate for both of these causes, and we really need people's help to make it a successful journey. DuPree: Absolutely. So are you all setting a certain goal in terms of fundraising? Bobby Jenkins: We are. We're working on the goal. Quite frankly, we'd like to be around a million dollars between the two of us. It's a big goal, but it's both big needs and the work that needs to be done. It's going to take that. And so I really think this will be our last big bike ride. I'll be almost 67 when we finish, and I don't think I'm going to want to go across the country again, but it is important, and I am passionate about it, and the need is big. DuPree: I know people at home are going to be hearing about this and thinking, you know, what can we do to help you all? Or how can they help the certain causes you all are supporting? So fill in the blank for them. What should they do? Bobby Jenkins: So, You can go there, and you can see my picture and Raleigh's picture, and you can donate to both or one. But that's a big part of it, and it's awareness. Having the opportunity to talk about this, awareness about what sudden unexplained death in childhood is, awareness about Mission Lazarus and the challenges in Haiti. Both of those people can learn more about it at but we'd sure appreciate their prayers, and we'd sure appreciate their support as far as the bike ride. DuPree: Other people at home might be also wondering how you're preparing for this, because I know that's coming up in like, a month or so, right? Raleigh Jenkins: We're almost six weeks away right now, so yeah, it's here. I will admit I had ChatGPT build my workout program. So I have a program that's a daily activity of what I'm doing, how I'm working out, and what my rides look like. DuPree: It keeps you on that. Raleigh Jenkins: It does. It is, it's wonderful. Bobby Jenkins: Raleigh cheated and really got the perfect workout. I'm a little dated, and I'm trying to just go ride my bicycle more and spend some more time in the in the saddle, and getting the legs ready, and all of that. But, you know, we'll be ready for it. And part of it is, you ride into shape. We'll average about 70 to 75 miles per day, and it'll take two and a half months to get from Anchorage and we are going to finish right there at Kyle Field at Texas A&M. DuPree: Yeah right back here close to home. Bobby Jenkins: That's right. DuPree: Well, Bobby and Raleigh thank you both so much for joining us and I wish you the best of luck not only in the fundraiser, but also with that ride. Bobby Jenkins: Thank you, appreciate it. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed. For the latest news, weather, sports, and streaming video, head to KXAN Austin.
