Latest news with #UniversityHospitalsBirminghamNHSFoundationTrust
Yahoo
11-03-2025
- Health
- Yahoo
'He talked about dying... how do you even answer that?'
The mum of an 11-year-old boy who is waiting to find out if he can access a new drug to treat his Duchenne muscular dystrophy (DMD) said her son talked about his fear of death. Harry, from Corby, Northamptonshire, was diagnosed with the incurable condition when he was six. His mother, Rosemary, said "he's talked about being scared of dying, which is heartbreaking, how do you ever answer this as a parent?" University Hospitals Birmingham NHS Foundation Trust, which is treating Harry, has been contacted for comment. There are many types of muscular dystrophy which gradually cause the muscles to weaken, leading to an increasing level of disability. DMD is one of the most common and severe forms, usually affecting boys in early childhood. Many people with the condition will only live into their 20s or 30s. Harry's family believe the drug Givinostat could slow his decline, but said the hospital trust had not yet reached a decision on whether to offer the drug. Harry's Dad, Stephen, said having access to the new drug would give him "an extra two years of mobility and an extra two years of life would come along with that". Mum Rosemary added: "This is it. Once he loses those muscles and he can't walk and he is in a wheelchair, there is no coming back from that, he will never walk again. "Time very much is muscle, because every day he is getting weaker." Harry's older sister Lucy, 13, also hoped Harry could access the drug. "I can't imagine Harry being in a wheelchair or not being able to walk," she told the BBC. "Just the thought of that makes me upset. "I think it would be just amazing to see Harry really happy." Emily Reuben, chief executive and co-founder of the charity Duchenne UK, said: "Families across the country are asking for a free drug, which patients in Europe and the US are already accessing, that could keep our children living longer. "Time is muscle, and we are urgently campaigning to convince hospitals to provide access to this free medicine." The Medicines and Healthcare products Regulatory Agency (MHRA) said it granted conditional marketing approval for the drug in December. Interim executive director for healthcare quality and access Julian Beach said: "While the MHRA is not responsible for the relationship between the Early Access Programme and the NHS, we will support the healthcare system as needed to facilitate the process." Follow Northamptonshire news on BBC Sounds, Facebook, Instagram and X. 'It's cruel that I cannot get muscular dystrophy drug' Drug to benefit son delayed by bureaucracy, dad says Duchenne UK
BBC News
11-03-2025
- Health
- BBC News
Muscular Dystrophy: Corby family fight for access to Givinostat
The mum of an 11-year-old boy who is waiting to find out if he can access a new drug to treat his Duchenne muscular dystrophy (DMD) said her son talked about his fear of from Corby, Northamptonshire, was diagnosed with the incurable condition when he was mother, Rosemary, said "he's talked about being scared of dying, which is heartbreaking, how do you ever answer this as a parent?" University Hospitals Birmingham NHS Foundation Trust, which is treating Harry, has been contacted for comment. There are many types of muscular dystrophy which gradually cause the muscles to weaken, leading to an increasing level of is one of the most common and severe forms, usually affecting boys in early childhood. Many people with the condition will only live into their 20s or family believe the drug Givinostat could slow his decline, but said the hospital trust had not yet reached a decision on whether to offer the drug. Harry's Dad, Stephen, said having access to the new drug would give him "an extra two years of mobility and an extra two years of life would come along with that".Mum Rosemary added: "This is it. Once he loses those muscles and he can't walk and he is in a wheelchair, there is no coming back from that, he will never walk again."Time very much is muscle, because every day he is getting weaker." Harry's older sister Lucy, 13, also hoped Harry could access the drug."I can't imagine Harry being in a wheelchair or not being able to walk," she told the BBC."Just the thought of that makes me upset."I think it would be just amazing to see Harry really happy." 'Time is muscle' Emily Reuben, chief executive and co-founder of the charity Duchenne UK, said: "Families across the country are asking for a free drug, which patients in Europe and the US are already accessing, that could keep our children living longer."Time is muscle, and we are urgently campaigning to convince hospitals to provide access to this free medicine." Follow Northamptonshire news on BBC Sounds, Facebook, Instagram and X.
The Independent
18-02-2025
- Health
- The Independent
Fact check: Photograph of masked people with axes was AI-generated
Claims have spread online about alleged events at a Birmingham hospital on Sunday February 16. One claim included a photograph which appeared to show armed people alongside the caption: 'Images reportedly show masked men with axes in a hospital in central Birmingham yesterday.' Another shared the same image with the caption: 'Following the stabbing of a 16-year-old boy a gang of axe wielding thugs ravaged an A&E Department at the local hospital.' There were also further claims that a gang had gone to 'ambush the accident and emergency department' or that the hospital had been 'stormed'. Evaluation The image of people with axes appears to have been generated using Google's AI tools. West Midlands Police said there had been 'no disorder' at any Birmingham hospital, while University Hospitals Birmingham NHS Foundation Trust said its 'services have not been impacted'. The force added: 'Images being shared on social media which claim to show people carrying weapons at a hospital are fake.' The facts According to one press report, around 200 people gathered in Pretoria Road in Bordesley Green on Sunday after a 16-year-old boy was stabbed. The road is near Birmingham Heartlands Hospital. West Midlands Police said the 'boy's family, along with community members close to him, gathered at the hospital and were understandably upset and concerned with his welfare'. The statement from police added: 'Following inquiries, we know that no disorder took place at any hospital in Birmingham following the stabbing of a 16-year-old boy.' It further said: 'Any claims of ambulances being raided or looted are untrue, while images being shared on social media which claim to show people carrying weapons at a hospital are fake.' University Hospitals Birmingham said: 'We have been working closely with colleagues from West Midlands Police, since Saturday, regarding allegations of disorder at our hospital. 'We would like to reassure people that our services have not been impacted and are fully open. 'The images and accompanying information being shared on social media – depicting violence, weapons and allegations of an ambulance being raided – are false.' Using a reverse image search, the PA news agency was able to find a version of the image of people with axes which shows a little more context. Running that version through Google Lens showed that Google's own software identified this photograph as being 'made with Google AI'. There are also several parts of the photograph that look odd. A higher-resolution version shows people gripping axes in a strange fashion, including one with their wrist at an unnatural angle and another who appears to have six fingers. Meanwhile, the green exit sign in the background looks distorted.
