Isle of Man family raises awareness of boy's rare condition
A family on the Isle of Man aims to raise awareness about a rare condition that causes their seven-year-old son to have a range of serious seizures at any given time.Lyidan Davies has Dravet Syndrome, a severe form of epilepsy that affects one in 15,000 people in the UK. Alongside frequent, prolonged seizures, symptoms also include developmental delays and several other health issues.His mum Lynda said when Lyidan was first diagnosed, at the age of one, she "felt so alone", unaware of anyone else on the island with the condition.
Lyidan had his first fit at eight months old, and at 10 months old had a seizure so severe he was put into an induced coma.Within the first 12 months of his life, Lyidan had been rushed to hospital more than 50 times and was formally diagnosed with Dravet Syndrome a few days before his first birthday.
Dad Thomas Davies said he would "never forget" the first time Lyidan had a seizure, when he was in a baby doorway bouncer. When he was first diagnosed he was "in hospital every 10 days", Ms Davies said."He'd drop into a tonic-clonic seizure and stop breathing. I've had to give him rescue breaths more times than I can count," she said.Some seizures lasted more than three hours, Ms Davies explained.While the condition left the family constantly on the lookout for signs of a seizure, Ms Davies added they coped by taking it "one cup of tea at a time". And despite the regularity of hospital trips and treatments, she said Lyidan had a "great sense of humour" and was "incredibly strong". Mr Davies said he was proud of Lyidan, but also his other two children who acted as carers to their younger brother.
Dravet Syndrome UK director Claire Eldred said: "It impacts every part of life. It's a really devastating condition and a life changing diagnosis."She said: "It is really challenging for families to live with on a day to day basis."The charity had been "a huge help" to the family, Ms Davies said, especially in the early days of Lyidan's diagnosis.Throughout May, 25 members of Lyidan's family and friends took part in a 5km (3.1 miles) challenge every day to raise awareness and money for the charity.
Read more stories from the Isle of Man on the BBC, watch BBC North West Tonight on BBC iPlayer and follow BBC Isle of Man on Facebook and X.
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
The Sun
an hour ago
- The Sun
Geordie Shore's Holly Hagan reveals she was ‘scared to sleep' amid fears her baby son would die weeks after giving birth
WORST FEARS The reality star opened up about the unexpected emotional toll of becoming a mum HOLLY Hagan has revealed she was so overwhelmed after giving birth, she was terrified of going to bed at night. The Geordie Shore star, 32, welcomed her son Alpha-Jax, now two, with footballer hubby Jacob Blyth, but says the early days of motherhood left her in tears every evening. 6 6 6 6 Speaking on her new CBeebies Parenting Helpline podcast with BBC Radio 1 DJ Charlie Hedges, Holly opened up about the unexpected emotional toll of becoming a mum. She confessed: 'I wish somebody had warned me about the baby blues, because oh my God, that hormone drop once I got home from hospital — I was crying for no reason. 'It would get to 6pm, 7pm and I'd just burst into tears. I was scared of going to bed, I didn't want to be alone.' The reality TV favourite added: 'It was very strange, but thankfully that passed after a week or so. But nobody warned me. I wish someone had spoken to me about that. It wasn't fun.' And it wasn't just the hormones keeping Holly up at night — she was plagued with anxiety over Sudden Infant Death Syndrome (SIDS), and found herself obsessively checking on Alpha-Jax. Geordie Shore star Holly Hagan cruelly mum shamed as she shares toddler's 'I worried about febrile seizures and all these things you don't really hear about until you have social media,' she admitted. 'It's great for advice but it also shows you loads of terrifying stuff. 'I thought SIDS was really common. I was absolutely terrified thinking one day he might just stop breathing. I even used an Owlet sock that tracked his breathing, oxygen and heart rate because I'm such an anxious person.' Holly also opened up about the challenges of parenting a 'high-temperament' child and said it's taken her two whole years to feel like she's finally cracked motherhood. 'I've made no secret that it's been a difficult journey with him since he was about four months old,' she said. 'I'm finally getting into the swing of it, but it's taken a long time. Motherhood completely turns your life upside down.' 6 6
The Independent
an hour ago
- The Independent
Weight-loss jabs may need to be taken for life, experts warn
Weight-loss jabs may have to be used for many years if the long-term benefits to patients and the NHS are to be realised, experts have said. The drugs are sold under brand names like Mounjaro and Wegovy and work by reducing food cravings. Obese patients can currently be prescribed the jabs on the NHS after being referred to specialist weight loss clinics, which are usually located in hospitals. Hundreds of thousands of people also access the medication privately at pharmacies. There have been warnings about buying potentially unsafe jabs online from unregulated retailers and potentially missing out on wraparound support. Experts said the jabs should not be seen as the first option in weight loss and should be used in conjunction with lifestyle changes, such as eating more healthily and increasing exercise. Professor Graham Easton, a GP who has been using weight loss jabs himself, said: 'I think it's a major issue about the proper funding and resourcing of not only the GPs in the surgeries but also the wraparound care we talked about. 'I think the other issue is that so far, to my knowledge, the NHS and National Institute for Health and Care Excellence have talked about this being something you take for two years, and that's probably related to data from research studies. 'But as we discussed, this is likely to be a lifelong commitment if it is going to be worthwhile to the NHS. 'There's no point in most people taking it for a couple of years and then have the weight bouncing back. 'You can argue possibly you're about to prepare for surgery or something, but in most cases it doesn't make any sense. 'Then I think there's a big issue around access. Most obesity occurs in poorer populations as wealthier populations tend to not be so affected. 'There's a massive sort of socio-economic inequality and there is a worry about this driving that inequality even further. 'Unless the NHS makes sure that these are available across the board equally, I think that's a major risk.' Prof Easton said recent studies had shown people who stopped taking the drugs had put the weight they lost back on within around a year. 'That's often true of any diet, people would say, and that's certainly my experience of having wrestled with my weight in diets over the years,' he said. 'All I would say that I found interesting from that review was that they were suggesting perhaps that weight returns even quicker after having been on GLP-1 drugs. 'Then speculating, because there was no way of knowing from that review, that perhaps it's because people are not changing the behaviours we've been talking about like exercise and other lifestyle changes, just relying on the drugs. 'When you stop them, of course, you're going to put weight back on. The switch is turned back off, or whatever it was. 'I mean very similar to, for example, statins or anti-hypertensive blood pressure medications, if you want lifelong effects, you have to keep on them lifelong.' Prof Easton was speaking at an event at the Cheltenham Science Festival discussing the growing use of weight loss drugs with neurophysiologist Dr Simon Cork and consultant endocrinologist and obesity expert Dr Tony Goldstone. Dr Cork said the jabs have an important role to play in losing weight but are part of wider changes to diet and lifestyle. 'I think we have to understand that diet is always limited. People will tend to lose on average around 5% of their body weight on a diet,' he said. 'But you're hungry, you're miserable, you're tired, your wife hates you because you're so grumpy, you're not going to continue with that. 'But we should absolutely all be looking at our diet and all changing our diet, and doing something.' Dr Goldstone said weight loss drugs had been used in the treatment of diabetes for over a decade and had benefits of reducing the risk of developing other conditions. 'We're now in the third and fourth generation of these drugs, but the first generation of these drugs we've been using for 15 years for diabetes,' he said. 'There is nothing of concern that has emerged. In fact, all we're seeing are benefits. I'm not too worried about longer term side effects coming out. 'There is no real biological reason why there should be dangerous side-effects in the way that we know these drugs work. 'The benefits of the weight loss improvement in the diabetes are actually by themselves helping health and preventing other diseases, like cancer, heart attacks, renal failure, and potentially even reducing the risk of Alzheimer's disease. 'All those benefits, even if there was something that we hadn't really thought of that emerged down the line, I suspect that the harm of that is outweighed by the potential benefits of weight loss improvement in diabetes control.' Dr Cork said no drug is without side-effects and previous weight loss medications had failed because of them. 'There are side-effects, there are some concerning side-effects that tend to be very rare, but then you can monitor for those side-effects,' he said. 'As long as you're getting the correct care, as long as your GP is aware that you're taking them, then those should be identified. 'If you do find those side-effects, you can stop taking the drug.'
Daily Mail
an hour ago
- Daily Mail
STI map of Britain! As cases of terrifying syphilis soar, is your area a hotspot for one of the 5 biggest sexual diseases?
Where you live could have a big impact on your risk of catching an STI—with some areas of the UK being hit far worse by infections than others, new figures reveal. Fresh analysis of 2024 data reveals stark regional differences, with parts of London among the worst affected. The South London borough of Lambeth tops the national table, with the highest rate of sexually transmitted infections in England. In 2024, Lambeth recorded more than 3,250 new diagnoses per 100,000 people—equal to just over three per cent of the local population. Meanwhile, Forest of Dean is the place where you're least likely to pick up an STI, with rates as low as 201 per 100,000. Now, MailOnline has created an interactive map showing how areas compare for infections including syphilis, gonorrhoea and chlamydia. It comes as health officials warn that syphilis cases have surged to the highest level since the late 1940s. Once again, Lambeth was the epicentre, with 138 syphilis cases per 100,000 people. It was followed by Westminster (131) and Southwark (107), continuing the trend of central and south London boroughs being disproportionately affected. Lambeth also recorded the highest rate of gonorrhoea at 1,114 cases per 100,000 people—about one in every 100 residents—followed by the City of London (958) and Southwark (867). The national average was just 124. Although overall gonorrhoea cases dropped by 16 per cent last year, experts are raising concerns over a rise in drug-resistant strains—dubbed super-gonorrhoea. The UK Health Security Agency (UKHSA) confirmed 14 cases of the hard-to-treat big had already been detected by May 2025—more than the 13 reported in all of 2024. The city of Lincoln in Lincolnshire that took top spot for chlamydia with 1,390 cases per 100,000, again equivalent to one in every 100 people have the STI. This was followed by Lambeth which recorded 1,182 cases per 100,000 and Hackney with 1,015. The national chlamydia rate in 2024 was 293 cases per 100,000 people, making it the most prevalent STI in the country. Hammersmith and Fulham in west London recorded the highest rate of genital herpes last year with 192 cases per 100,000 people. This was followed by—yet again—Lambeth with 157 cases per 100,000 and Southwark with 146. The national rate was 48 cases of genital herpes per 100,000 people. But Lambeth didn't make the top three for genital warts. Instead it was Hackney which took the crown with 142 cases per 100,000 people. This was followed by the City of London with 134 cases per 100,000 people followed narrowly by Hammersmith and Fulham with 132 cases. Following Lambeth for total STI cases per 100,000 people was Southwark with 2,787 and Hackney with 2,680. For comparison, the national rate was 632 STIs per 100,000. Most STIs are curable if detected early, but many have no symptoms—meaning people can unknowingly spread them to others. Left untreated, they can cause serious complications, including infertility, chronic pain, and even organ damage in the case of syphilis. Speaking earlier this week Dr Hamish Mohammed, consultant epidemiologist at UKHSA said: 'These infections can have a major impact on your health and that of any sexual partners – particularly if they are antibiotic resistant,' he said. 'If you've had condomless sex with new or casual partners—either in the UK or overseas—get tested for STIs and HIV at least yearly, even if you don't have symptoms. 'Regular testing protects both you and those you're having sex with.' Experts continue to stress: prevention is better than cure, and safe sex matters wherever you live.
