Bridlington boy who uses a ventilator in fundraising bike race
A Bridlington boy who uses a ventilator has raised almost £600 after taking part in in a relay race on behalf of a charity that designs equipment for children with disabilities.Henry, 7, cycled along the town's seafront last week using a specially designed trailer holding his breathing equipment.His leg was part of a 2,500 mile (4,024 km) national race from Glasgow to Windsor to generate funds for the Cerebra charity.The Welsh-based organisation has produced specially adapted paddleboards, bikes and wheelchairs, which it provides for free.
Head of product design Dr Ross Head said the charity responded to requests directly from families."Whether it's an adapted bike, a paddle board or a device to help a child throw a ball for their dog, each product has a real impact on a child's life," he said. "We might only make one or two of each item, or we might produce hundreds, but they are so well-used because it meets a real need for that child."Henry was born with multiple medical conditions and needs help to breathe through a tube in his neck.Despite requiring a ventilator 24 hours a day he plays football, cycles and learnt to swim.
His mother Shevonne said that wherever Henry goes the medical equipment "has to move with him"."The difference with Henry is that he is a mobile child as well and he's running, climbing and everything and he has always been that way," she told the BBC One Show."Dr Ross made these trollies ready for us to try different prototypes."All of getting up to this point Henry being so independent is down to those solutions that Dr Ross has made for us."Listen to highlights from Hull and East Yorkshire on BBC Sounds, watch the latest episode of Look North or tell us about a story you think we should be covering here.
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The Independent
6 hours ago
- The Independent
‘You have to fight tooth and nail': PIP claimants tell of struggle to get awarded as Labour accused of making it harder
Sarah has just found out that she will likely be able to keep her Personal Independence Payment (PIP) after months of worry. The 40-year-old mother-of-one works from home, which allows her to juggle life with being a new parent and her disabilities. Chronic fatigue syndrome in her joints means she regularly experiences brain fog and exhaustion, and needs help. And it's her PIP that makes this possible, helping her to afford a carer, stay in work and spend time with her baby. Claimed by 3.7 million people, the health-linked benefit at the heart of Labour's proposed welfare reforms is designed to help with extra costs incurred by living with an illness or disability. The government's concessions on plans to cut welfare spending now mean that Sarah won't be subject to stricter eligibility criteria when next assessed for the benefit. Instead, from November 2026, only new claimants look set to be subject to the tighter criteria, under Labour's bill going through Parliament. But Sarah says she is struggling to see this as a victory. 'If there's another Sarah who's born a few years later, and ended up in this situation, it's still just as appalling,' she says. 'It's encouraging some disabled people to throw other disabled people under the bus. And it's vicious, because it relies on some people being scared enough to say 'well, we'll take what we can get'.' And like so many others, Sarah did not find applying for PIP an easy process to begin with. 'It feels really deliberate' 'It feels like you're being tripped up constantly,' Sarah says. 'It feels really deliberate, how difficult it is. It feels extremely deliberate. Because there are so many ways it can be made more accessible to disabled people.' Halfway through her assessment for PIP, Sarah's infant daughter started to cry in the other room. This caused her to panic, and she shouted to her husband that the baby might need changing. Because of this 'the assessor said I was clearly able to respond to my daughter's needs and assess what she needed,' Sarah says. 'But I said to him I can't care for my daughter on my own, I rely on other people doing that for me. I need somebody with me while I'm with her.' None of this was included in his report, she claims. And it's not just Sarah. Ginny's husband Tim was diagnosed with myotonic muscular dystrophy in 2006, a progressive genetic condition that affects muscles and movement. The mother-of-two works part-time while also caring for her husband full-time. His PIP award means means Ginny is entitled to a £200 Carers Allowance, which she says is essential to support her family. 'Tim doesn't like to admit it, but people frequently can't understand what he says. Every day I'm asking him to repeat himself as his wife, and I know him well,' Ginny explains. 'He was asked to repeat himself at least five times during the assessment. But when it came to the report, it said the assessor had no problem understanding him.' Ginny says the assessor also wrote down that Tim was managing to work part-time for 25 hours as a library assistant. He was actually working just 25 hours a month, just over six hours a week, Ginny says. 'Do you have a dog?' At a PIP assessment, the assessor will decide if an applicant has limited ability to carry out daily living activities. They do this by asking applicants to carry out a range of activities, awarding them points based on how limited their ability is. According to one former assessor, opening questions might include: 'How are you doing today? How did you get here? Do you have a dog?' An applicant could be forgiven for thinking these questions are just small talk, their PIP assessor being friendly and trying to ease them into the process. But in most cases, the assessment has already begun, the former worker says. How they answer these questions could be the difference between a lifeline to pay for their health-related costs or nothing. The former assessor, who wished to remain anonymous, said this approach is standard for PIP assessors. It is permitted under the DWP 's PIP assessment guide, which recommends assessors carry out 'informal observations' that may 'show discrepancies'. 'As soon as you say to them, 'I'm here to do the assessment, is that OK?' and they say yes, it's started,' she explains. 'And then you'll comment, you'll look around the room for photographs of them on holiday, of children. You're looking for evidence that they're not telling the truth.' According to polling by disability charity Sense, over half (51 per cent) of disabled people with complex needs report feeling humiliated during benefits assessment. A further 45 per cent said the process made their symptoms worse. The charity's policy adviser, Evan John, said: 'I think sometimes when you hear some of the discussion around PIP, somebody might think that it was an easy benefit to claim, but that experience is really divorced from the experiences of disabled people.' 'We'd like to see a system that treats disabled people with dignity, that assess people fairly, but doesn't make them feel like criminals for trying to access the support they need.' 'You have to fight tooth and nail' Neither Sarah nor Tim were awarded any points at their PIP assessment. Instead, they asked for a mandatory consideration, but were turned down and faced a lengthy wait for an appeal at a tribunal. 'We went to mandatory consideration fully aware that they would just turn that down because that seems to be the standard with them,' Ginny says. 'But that was just a step to go to appeal.' Sarah was only given the lowest rate of PIP after tribunal, while Tim was awarded his in light of more medical evidence. Around 56 per cent of PIP assessments resulted in a reward between 2019 and 2024. But around two-thirds of decisions are overturned at the tribunal stage, independent of the DWP, by a panel of decision-makers including a judge. 'You have to fight tooth and nail,' Ginny says. 'All the government's talk about 'people just are getting this too easily' or 'supporting people who have the most severe conditions'. 'In my book, my husband has a severe condition and it just feels like they're redefining disability to suit themselves.' It remains to be seen whether the government's concessions over its welfare plans will be enough to appease wavering backbenchers with MPs set to vote on the measures on Tuesday. A DWP spokesperson said: 'The fact is that PIP assessment suppliers and healthcare professionals are involved in the process but are only one part of the evidence used – they have no role in the decision-making process, and are clearly instructed not to base their opinions solely on the situation seen at assessment. 'We're creating a sustainable welfare system that genuinely supports sick and disabled people while always protecting those who need it most, and at the heart of this is our review of the PIP assessment to ensure it is fit for the future. 'We will work with disabled people and a range of experts on this as we deliver our Plan for Change.'
The Guardian
11 hours ago
- The Guardian
‘Worse than anything under the Tories': changes to welfare bill anger disability campaigners
'As a community we feel totally let down and these last-minute concessions do nothing to make up for that,' Andy Mitchell, a disability campaigner and a member of Unite Community, says. 'My friends are scared. Some have spoken about suicide. This is worse than anything that happened under the Tories.' With the government offering major concessions to the welfare bill, ministers will be hoping critics have at last been appeased. But many campaigners have reacted with anger and concern over the changes. Disabled people's organisations, such as Inclusion London, WinVisible and Long Covid Advocacy, have told the Guardian that plans to exempt only existing claimants from the cuts will create a 'two-tier' benefit system that 'condemns' future disabled people to poverty. 'Protecting entitlements for current recipients is the right thing to do and if it's right for current recipients then it has to be the right thing for future claimants too,' says Tracey Lazard, CEO of Inclusion London. 'Even with these concessions, the bill before parliament is not a reform – it's still rationing. There is no moral or economic case for balancing the books on the backs of disabled people. MPs must not condemn future disabled people to the poverty and indignity these devastating planned cuts will cause.' Claire Every, spokesperson for Long Covid Advocacy said: 'A last-minute napkin deal will not assure safety for disabled people. The concessions create an unfair two-tier system – it is unethical to only throw some people under the bus. 'These changes will negatively impact people with long Covid as they discriminate against those with fluctuating disabilities and will see those who contract the illness in the future receive less support than those who fell ill earlier in the pandemic,' she added. Some campaigners warn that a system that treats new and old claimants differently could lead to future legal challenges against the government. 'How can you justify someone with the same impairments getting two different rates of social security payments based solely on [when they applied or how long they've been ill]? Is it even legal?' says Linda Burnip from Disabled People Against Cuts. 'The concessions are ridiculous and [effectively mean] anyone not already ill or disabled in Britain can't become ill or disabled and expect to have enough money to live on in the future.' Others have accused the government of trying to sow division within the disabled community to quell opposition to the bill. 'We refuse the government's divide-and-rule between old and new claimants, and MPs should keep voting against the horrendous cuts they are planning,' says Claire Glasman from WinVisible. 'We won't stop campaigning – new claimants lose out massively across Pip and universal credit, especially women with invisible and fluctuating conditions. Labour is still going after sick and disabled people. 'These offers of concessions are a glimpse into the window of the soul of the government; that they think people are protesting these cuts for their own gain not the wellbeing of all disabled people,' says Cherylee Houston, co-founder of the #TakingThePIP campaign. It is still unclear whether the concessions will protect eligibility for the connecting benefits to Pip, such as carer's allowance, she added. 'We don't agree to anything which doesn't safeguard future disabled people from abject poverty and despair. How can they draw a line to which people who become disabled after a certain date will not receive the support they need?' The government has pledged the entire criteria system will be reviewed in conjunction with disabled people, but disability groups told the Guardian they are concerned any changes from the review will not be made before the bill passes, while MPs will not have sufficient time to consider proposals. 'MPs are going to be voting on these concessions without people having a decent enough time to look and understand them,' says Mitchell. 'One of the points from the amendment was that disabled people hadn't been properly consulted, so how can it be right when these concessions have not been consulted on at all?' 'If concessions are possible, so is proper reform,' added Lazard. 'Fast-tracking a bill with such major consequences is irresponsible and cruel. It denies parliament, disabled people and the public real scrutiny. We urge MPs to stand your ground, stop this dangerous bill and demand better for everyone.'
The Sun
11 hours ago
- The Sun
We choose to live our lives full of joy, love and hope for Deborah, say Dame Debs' parents 3 years after her death
LET'S raise £20million for Dame Debs. That's the rallying cry today from her family, on the third anniversary of the inspirational cancer campaigner 's death. 9 9 9 Heather and Alistair James tell The Sun: 'Wouldn't it be great if we could see the total raised for her Bowelbabe Fund surpass the £20million milestone? 'We know she would be over the moon at the idea, knowing that the money is going to help other people in her situation, giving them more precious time with their loved ones.' Sun columnist Dame Deborah James died on June 28, 2022, five years and seven months after she was diagnosed with stage 4 bowel cancer. The Bowelbabe Fund, that she established five days after returning to her parents' home in Woking to die, now stands at more than £17million. In her final weeks, the mum-of-two called on people to donate the cost of a drink, 'to see me on my way'. And three years later, her parents are echoing that call. 'Let's all donate the cost of a drink, and raise a £3million toast to Deborah,' they said. 'What a wonderful way to remember her, and help continue the incredible work she started.' It's their daughter's staggering legacy and the seismic impact she had in her short life that inspires the couple each and every day. 'This is not what we had planned for our lives,' Heather tells The Sun. 'We didn't expect to be grieving the loss of our eldest child and facing the rest of our lives without her. NHS rolls out bowel cancer screening to 50 and 52-year-olds after Dame Debs' campaigning 'But it is our reality, and we have a choice. We could choose to wallow in our grief, but I know Deborah would hate that. 'Instead, we are choosing to live our lives as she would, embracing every opportunity, making precious memories, enjoying every moment and focusing on her positive legacy. 'I am so grateful to have had 40 years with Deborah, and we are so proud of everything she achieved. I will never not miss her, but she inspires me to live a better life every day, and for that I am so grateful Heather James 'To let our sadness consume us wouldn't do justice to the person Deborah was. 'I will never not miss her, but she inspires me to live a better life every day, and for that I am so grateful.' One final gift Inspired by their daughter, Heather and Alistair have vowed to continue the work she started, raising awareness of a disease they knew so little about until Deborah educated them, and millions of others, shouting from the rooftops for people to ' Check your poo '. Just last week Alistair backed calls for Wes Streeting to end cancer diagnosis and treatment delays, pleading with the Health Secretary to overhaul NHS care with the upcoming cancer strategy. He signed an open letter led by Cancer Research UK that calls for faster diagnosis, waiting times to be met, and more equal access to treatment. In establishing her Bowelbabe Fund in the weeks before she died, Dame Debs gave her family one final gift - a positive focus for their grief. While the couple continue Debs' work in the public eye, Seb, her siblings Sarah and Ben help run the Fund behind the scenes, and her children Hugo, 17, and Eloise, 15, help decide where the money raised should be spent. Three years on, that legacy shines brighter than ever. 9 9 9 In the last year alone, money she raised has helped fund a state-of-the-art interventional radiology machine at the Royal Marsden Hospital, as well as a project that hopes to make personalised treatments for bowel cancer patients a reality - something Debs was very passionate about. In January the NHS finally rolled out bowel cancer screening tests to all those people in England aged 50 and over, after Debs spearheaded The Sun's No Time 2 Lose campaign, calling for the age to be lowered from 60 - a move that will save thousands of lives each year. Meanwhile, the newly-named Bowelbabe Laboratory opened at the prestigious Francis Crick Institute in April, and the team there are dedicated to developing more targeted treatments to combat the disease. And perhaps the icing on the cake came when King Charles hailed Dame Debs an inspiration in a speech at a reception he hosted at Buckingham Palace in April, attended by Heather and Alistair. It was the second royal seal of approval for Dame Debs after Prince William visited the family's home to bestow the honour of a damehood on her, after The Sun mounted a campaign to honour our columnist. Quoting Debs, His Majesty said: 'Find a life worth enjoying; take risks; love deeply; have no regrets; and always, always have rebellious hope.' 'I forgot to curtsey and I held his hand for far too long,' Heather recalls, laughing. Debs' fundraising efforts May 9, 2022 Dame Debs launched her Bowelbabe Fund with Cancer Research UK, hoping to raise £250,000 to help give more people more time with loved ones. June 28, 2022 On the day she died, her Fund's total stood at a staggering £7million. In the days after she died The Sun called on readers to help push it over the £10million mark and in a matter of days it was reached. June 28, 2025 Since her death, an extra £10million has been raised in Dame Debs' honour, with the total standing at over £17million. To donate visit 'It was so embarrassing, but he was so warm and wonderful. What an honour that Deborah brought us to meet the King. 'It was a real 'wow' moment, knowing that even the King has been touched by Deborah's message, and all these years later. 'For her words to resonate with him was so special.' 'She would've been blown away,' dad, Alistair adds. 'It wasn't just the King, one lady-in-waiting made a point of telling us she followed Deborah, and even staff in the cloakroom told us of the impact she'd had on their lives too.' To calm their nerves at the prospect of rubbing shoulders with royalty, the couple admit they had to stop for a drink en route, 'for a bit of Dutch courage', Heather laughs. 'Deborah would've done exactly the same,' she adds. By Lizzie Parry, Head of Health at The Sun and Deborah's editor and friend 'YOU'LL remember me when the west wind moves, upon the fields of barley'. I can't listen to those famous lyrics now without welling up, even now three years on. Fields of Gold is the song Dame Debs chose to play at her funeral, as her casket was carried out of the beautiful church in Barnes, as her loved ones said their goodbyes. I sobbed then, and it will forever remind me of that moment and Debs. It's not the only thing. Grief is a multi-sensory thing. I remember her when I hear that song, when I feel the rain on my face, when I taste a glass of chilled champagne, when I smell her rose and when I see sequins catching the light. It's all encompassing, and it often catches you unawares. Where once all those things felt quite painful, three years on since her death and they do make me smile now (even through the tears). Where once I avoided memories of her, now I love being caught by a flash of my beautifully bonkers friend. Though, my brain really can't quite fathom that it's been so long since I last spoke to her and laughed with her, and yet it feels like only yesterday at the same time. While she was alive, Debs taught me so much. She reminded me - and her thousands of followers - that life is for living, that there is joy to be found in every single day and that we shouldn't wait for the 'right time' to do life. In death, those lessons still hold true for me, and I often find myself thinking 'what would Debs do'? Invariably the answer is 'just do it' whether it's booking a holiday, buying the dress, or squeezing a date with my best friends into an already busy week. So, today on the third anniversary of the horrible moment I learned my friend had passed away, I'll ask the same question… 'What would debs do?'. She'd put on her shortest, sparkliest dress and wildest pair of heels, pop open a bottle of champagne and she'd dance to Fields of Gold while beaming with joy and crying all in one go. Debs, forgive me I might have to leave the sequins in the wardrobe in this weather… but that's exactly how I plan to remember you today. And if she touched your life in any way, I know she'd love the idea of you doing the same. 'All I wanted to do was wear a pair of comfy trainers under my dress, but I could hear Deborah in my ear telling me absolutely not, and that I must wear my heels, ' no pain, no gain'. 'So of course, I wore the heels and my feet were covered in blisters the next day!' For Heather and Alistair their own grief is one thing, but their true sadness comes from knowing what Deborah is missing out on. 'When anybody dies young, it is the life they miss out on that is the hardest thing to face,' says Alistair. 'For me, it was about a year before she died when I realised the end was coming. 'We were on holiday in France and we were walking together, and it dawned on me that she knew that time was running out. 'That was when I felt saddest. 'My other sadness is seeing the children. She would've adored seeing them grow up, at 15 and 17 they are such great ages now. 'Given what they have been through they have really coped incredibly well, she would be beaming with pride. 'They are both turning into such lovely people.' Heather adds: 'Seb is such a wonderful dad, they have a very special relationship. 'He's fulfilling all his promises to Deborah, and some. They are a lovely little unit, they are the best of friends. 'Seb really understands them, and they are so protective of him.' Marking three years This year, to mark the third anniversary of Deborah's death, the family are all getting together at Heather and Alistair's home. It is where Deborah took her last breath, holding her husband Seb's hand and surrounded by her parents and siblings - her beloved Wimbledon on in the background. 'As she passed away Wimbledon was on, she absolutely loved it and over the years we all got to go with her,' says Heather. 'It will always remind us of that time, and on Monday, Alistair and I will be there for the opening day. 'We'll raise a glass to Deborah and remember those special moments with her, as well as the gift she left us all - a lesson in how to really live life.' What are the red flag warning signs of bowel cancer? IT'S the fourth most common cancer in the UK, the second deadliest - yet bowel cancer can be cured, if you catch it early enough. While screening is one way of ensuring early diagnosis, there are things everyone can do to reduce their risk of the deadly disease. Being aware of the signs and symptoms of bowel cancer, spotting any changes and checking with your GP can prove a life-saver. If you notice any of the signs, don't be embarrassed and don't ignore them. Doctors are used to seeing lots of patients with bowel problems. The five red-flag symptoms of bowel cancer include: Bleeding from the back passage, or blood in your poo A change in your normal toilet habits - going more frequently for example Pain or a lump in your tummy Extreme tiredness Losing weight Tumours in the bowel typically bleed, which can cause a shortage of red blood cells, known as anaemia. It can cause tiredness and sometimes breathlessness. In some cases bowel cancer can block the bowel, this is known as a bowel obstruction. Other signs include: Gripping pains in the abdomen Feeling bloated Constipation and being unable to pass wind Being sick Feeling like you need to strain - like doing a number two - but after you've been to the loo While these are all signs to watch out for, experts warn the most serious is noticing blood in your stools. But, they warn it can prove tricky for doctors to diagnose the disease, because in most cases these symptoms will be a sign of a less serious disease. 9 9 9
