'Fragile' girl's life transformed after rare condition caused her to stop eating
The family are sharing their story during Children's Hospice Week, which runs until Sunday, to raise awareness and funds for local hospices.Ellie's parents first noticed their daughter might be unwell when she stopped crawling at nine months old.Genetic testing showed that Ellie had SMA Type 2. The condition is life-limiting, affecting her muscles, swallowing and breathing.The period after the diagnosis was "absolutely awful", Beth said."I was searching for a cure anywhere I could. We were just desperate – we were like frightened children," she said.Ellie can still use her lower arms and hands to write, but is unable to stand independently or walk as her upper thigh muscles have weakened. "While she does physically struggle, it's Ellie's confidence and sense of identity that's damaged the most," said Beth. "She still very much cries because she can't go on a climbing frame and do things like other children. Her mental health is massively affected."
'Very fragile'
In 2023, Ellie took to her bed on and off for about six months. She stopped eating, dropped out of school and told her parents she did not want to live. "It was an incredibly scary time for us and for her."But that was luckily the year that we discovered Julia's House, and things changed massively."Being around other children who are in wheelchairs or know what it's like to have a complex condition has also been phenomenal for Ellie. She has developed some really special friendships because of Julia's House."She added that all of Julia's House nurses, play worker and counsellor helped Ellie through her "very fragile mental health condition".
'Enormous strain on parents'
Mike Bartlett, the charity's chief executive, said that Ellie's case proved how important it was to support parents, as well as children."Looking after a very poorly child puts an enormous strain on parenting. Research shows that many parents looking after seriously ill children suffer ill health themselves," he said.But it is becoming more difficult for the charity to provide its services, due to the economic climate, he added."The problem is the costs have gone up, the cost of providing care, staffing, energy bills, inflation all have a pressure on our bottom line and it's getting harder and harder to fundraise," he said.
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Daily Mail
29 minutes ago
- Daily Mail
Expert reveals common kitchen spices that can kill most viruses and cure colds
An herbal practitioner has shared the plants that he claims are more effective than prescribed medicines. Herbalist Simon Mills appeared on The Diary of a CEO with host Steven Bartlett recently, where he listed his go-to herbal medicines. The author insisted that there are a few common kitchen spices that can combat everything from a common cold to cardiovascular problems. He credited ginger, chili, turmeric, cinnamon and garlic as the household ingredients that can kill most viruses. He also detailed the natural remedy that he claims can cure a cold, involving only ginger and cinnamon. Ginger root is said to contain several healing properties, including antioxidant, anti-inflammatory, anti-nausea, raising body temperature. To effectively use it to combat a cold, Mills said to grate about a 'thumb's size' of the plant into a mug. He then combines it with a stick of cinnamon, which contains healing properties such as digestive support, respiratory relief, menstrual symptoms in women, as well as helping to ease other pain. 'You either grate that if you have a spice mill or you take a teaspoon of already dried spice,' he explained. From there, Mills said he adds hot water, letting it sit for a few minutes before straining it into a separate mug. 'You can feel it warning straight away,' he said. He explained that when you ingest ginger or other similar 'hot plants,' it can help clear out sinuses since ginger contributes to hyperemia - a reflex response to open the blood vessels. Mills said this in turn causes the cells producing mucus to loosen up and can even bring up phlegm from the lungs. 'There's a natural escalator that the body uses to get stuff out of the lungs that [get]s stimulated,' he shared. Mills also said he uses spices like ginger, cinnamon, and turmeric as his 'main go-to' to help fend off cardiovascular problem. In addition, he explained that if you cut turmeric in half, you get curcumin - which acts as an anti-inflammatory. The herb enthusiast also spoke of the benefits of garlic, explaining that when eating raw, the vegetable is a 'very powerful prebiotic' and can help the gut flora. '[I] encourage people not to ask the doc for an antibiotic and use some of these at-home, easy, and free treatments instead,' he said. Although much of the research into herbs and spices as medicine is still in an early stage – and often uses concentrated extracts or large doses you wouldn't get from a normal meal – there are signs that everyday amounts could give your long-term health a boost. The FDA considers herbal supplements as foods, not medicines, so they are not subject to the same testing, manufacturing, and labeling standards and regulations as medicines. According to John Hopkins Medicine, herbal supplements can interact with conventional medicines and may have strong effects. Doctors advise people not to self-diagnose or self-prescribe, and to talk with your healthcare provider before taking herbal supplements.
Times
2 hours ago
- Times
Mounjaro UK price rise will trigger obesity relapse, say experts
The upcoming Mounjaro price hike could cause people to pile weight back on and 'cycle in and out of obesity', experts have warned. The weight-loss jab, which is bought privately by 1.5 million people in the UK, will more than double in price next month — forcing patients off the drug if they can no longer afford it. Its manufacturer, Eli Lilly, is increasing the list price for the maximum 15mg dose from £122 to £330 for a monthly pen, while the 5mg dose is rising from £92 to £180. Pharmacies have warned that patients are in 'immense distress', with demand soaring as they stock up on Mounjaro before the price increase takes effect on September 1. Professor Tim Spector, a nutrition expert at King's College London, warned that the sudden increase in price had exposed the flaws of relying on weight-loss jabs to lose weight. He said: 'The price rise of the GLP-1 drugs comes at a tricky time for the million-plus Britons that have started taking the drugs. Any losses in weight they will have achieved will be reversed in just a few weeks, as their appetite kicks back in. 'People are being prompted to use these private networks of GLP-1 drugs without any real supervision, and, crucially, without any nutritional support.' Spector, co-founder of the Zoe nutrition app, said that people who were taking weight-loss jabs should instead have been 're-educated about food and good eating habits long term'. He added: 'It's a huge wasted opportunity that's going to get worse as the price for the consumer goes up, and therefore people are unlikely to stay on this long term. We're just going to be back to good old short-term diets, which will cycle people in and out of obesity.' The price hike is taking place after President Trump demanded that pharmaceutical firms lower prices for American patients and stop other countries 'freeloading' off US firms. Pharmacies said they were experiencing record demand and were helping people to switch from Mounjaro to Wegovy, a similar GLP-1 drug known as Ozempic when used for diabetes, as it is cheaper, although not thought to be as effective. • Jon Yeomans: Mounjaro is a taste of the battle to come over drug prices James O'Loan, the chief executive of the online pharmacy Chemist4U, said: 'The distressing news that prices are set to rise by up to 170 per cent with just two weeks' notice, in response to another aggressive initiative from Trump, is very troubling. It's caused immense distress to hundreds of thousands of UK patients on a weight loss journey, who worry all their hard-earned progress could be snatched away from them.' Asda Online Doctor said: 'Following the announcement of steep price increases by the manufacturer Eli Lilly starting in September, we have seen an instant 350 per cent increase in demand. We are making all efforts to enable our existing patients to continue treatment and are actively prioritising them. 'However, this will be a difficult situation for many of our patients with affordability being a key aspect in the access and/or continuation of these services. Therefore we deeply regret this decision from Eli Lilly to increase prices, which will affect many patients. We remain committed to providing an excellent service to our patients at a fair price.' • Mounjaro transformed me — but it had a huge effect on my family's life Dr Leyla Hannbeck, chief executive of the Independent Pharmacies Association, representing thousands of community pharmacies, said: 'Our members up and down the country have been dealing with worried patients, many of whom are enquiring about stocking up before the price increase hits. 'There is a very real danger that the higher prices will see patients desperate for cheaper products turn to the, often unregulated, online market.' Sandeep Dhami, a superintendent pharmacist at MW Phillips Chemists in the West Midlands, added: 'Patients on their weight-loss journeys are coming into pharmacies like mine angry and upset at the news of the price hike. Those on the highest doses, who will face the highest price hike are particularly concerned.'
BBC News
2 hours ago
- BBC News
More Staffordshire people asking for wellbeing support
A mental health charity worker says more people are reaching out for support as their lives get "busier" and attitudes Harrison, community engagement lead at North Staffs Mind in Stoke-on-Trent, said the number of people it helped had increased from about 8,000 to 12,000 over the last three told BBC Radio Stoke this was due to a combination of more people needing support generally and fewer being afraid to ask for help."People are reaching out and asking for support a lot earlier than they used to," he said. "Especially if you rewind the clock 10 years ago." Mr Harrison said the summer holidays often "disturbed" parents' and children's day-to-day routine, which can sometimes lead to issues around mental health."They are finding it tricky and I think we can all admit that life is a lot busier right now. It doesn't seem to slow down at any point," he added."Those extra stresses, they just build on to the anxiety that people face every day." He said the charity offered a lot of support for young people, including through The Maccas Project created in memory of 19-year-old Thomas McCauley, who took his own life in also has a drop-in service for teenagers in Stoke-on-Trent and has counsellors in about 40 schools around Harrison said: "I think it's hard for anyone, regardless of age, regardless of background, to talk about something that's very personal to them and something that makes them feel a lot more vulnerable."But he said the conversation around mental health was "much more prevalent" in society and people felt more able to reach out for help than they used County Council recently announced its Five Ways to Wellbeing campaign in a bid to tackle rising concerns over residents' mental authority said the county had seen a rise in emergency hospital admissions for self-harm as well as an above-average increase in new diagnoses of depression. Follow BBC Stoke & Staffordshire on BBC Sounds, Facebook, X and Instagram.
