East Yorkshire boy with Cystic Fibrosis to take on half marathon
A boy with cystic fibrosis is planning to complete a half marathon to raise money for a charity that supports people with the condition.Zac, 14, from Market Weighton, will take on the 13-mile cross-country walk through the Yorkshire Wolds on 19 September, to raise money for the Cystic Fibrosis Trust (CFT).Zac, who was diagnosed with the condition at 16 days old, balances regular hospital appointments with his love for playing sport.His mother, Amy, said: "There is no stopping him. He's growing, thriving and not letting his condition stop him in any way."
Zak was born two weeks early and became ill shortly after. His mother said the doctors initially thought he had a twisted bowel but after looking into his family history he was diagnosed with cystic fibrosis.Amy described hearing the news as "absolutely devastating".She said: "All you hear are horror stories of these very, very poorly children that never make it beyond childhood."I felt really guilty that we'd given that to him because, you know, it's a genetic disorder. "I knew rationally that it wasn't [their fault]. It's science, it's genetics."
'Very special moment'
Zac has balanced taking medication and attending appointments at Leeds General Infirmary every six to eight weeks with sport and exercise to keep his lungs healthy.Amy described him as "incredibly funny" and a "natural sportsman".She said he is passionate about supporting the CFT and started fundraising in Year 7 by nominating the trust as a house charity for his school to support.She said Market Weighton School had a tradition of completing the walk, which the pupils took part in and this year is the 50th anniversary."So to complete the half-marathon event the week before will be a very special moment," Amy added.
Amy said her son has designed training routes for him and friends Will, Will and Oscar, to prepare them for their challenge.Zac's original goal was to raise £600 but their online fundraiser has so far achieved more than £900.To parents who find themselves in a similar situation, Amy hopes Zac's story will give some hope that their child can live and grow.She said: "He's just a normal teenager."
Cystic fibrosis
According to the Cystic Fibrosis Trust, the condition is genetic and affects more than 11,000 people in the UK. It said one in 25 people carry the gene that causes it, usually without knowing.The condition causes the body to produce thick mucus, which affects the lungs and digestive system in particular, it said.People with the condition often look healthy, but it is life-limiting.
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.
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
The Independent
an hour ago
- The Independent
NHS green lights ‘Trojan horse' treatment that attacks cancer cells from inside
Blood cancer patients in England are set to be among the first in the world to access a pioneering "Trojan horse" treatment, health officials have announced. The targeted therapy, belantamab mafodotin, also known as Blenrep, has shown promising results in halting the progression of myeloma for nearly three times as long as current treatments, according to studies. Approximately 1,500 patients annually with multiple myeloma, an incurable bone marrow cancer, are expected to benefit from this new treatment. The National Institute for Health and Care Excellence (Nice) has approved Blenrep, manufactured by GlaxoSmithKline, for use within the NHS. NHS England has confirmed that it will be the first health system worldwide to roll out the treatment. The drug will be available to patients whose cancer has advanced or has not responded to initial treatments. Administered as an infusion every three weeks alongside other cancer drugs, this antibody drug targets and attaches to cancer cells. It has been dubbed a 'Trojan horse' treatment because it works by being taken into a cancer cell, before releasing a high concentration of a lethal molecule to destroy the cell from inside. 'Myeloma is an aggressive type of blood cancer, but we have seen a steady improvement in the outlook for patients over recent years as we have introduced new targeted therapies,' Professor Peter Johnson, NHS England's national clinical director for cancer, said. 'I am delighted that patients in England will be the first to benefit from this new treatment, which has the potential to keep cancer at bay for years longer, giving people the chance of more precious time with friends and family. 'This treatment could be life-changing for many patients and their families, and that's why it is so important that the NHS continues to secure quick access to the latest, innovative treatments like this, at affordable prices to the taxpayer.' Helen Knight, director of medicines evaluation at Nice, said: 'We're delighted that people in the UK will become among the first in the world to access belantamab mafodotin for this indication. 'This recommendation demonstrates our commitment to getting the best care to patients fast, while ensuring value for the taxpayer.' Trials have suggested that the treatment, in combination with bortezomib and dexamethasone, delayed progression of the disease by an average of three years, compared to just over a year for patients taking commonly-used drug daratumumab along with the other treatments. Patient Paul Silvester, 60, from Sheffield, was diagnosed with myeloma in July 2023 and received treatment at the Royal Hallamshire Hospital. The first treatment he was given failed to stop his cancer from progressing so he was given belantamab mafodotin through an early access programme. 'I feel like this treatment has brought the party balloons back in the house. It has been amazing – within the first two or three weeks, after the first dose, I was in remission,' he said. 'It gives me quite a lot of confidence in the drugs and it makes me more optimistic about the future. 'I've been feeling well and I'm still quite active – that's what's important in terms of your quality of life. 'One of my daughters is graduating from university in October and it's a goal for me to be there.' Shelagh McKinlay, director of research and advocacy at blood cancer charity Myeloma UK, said: 'It's fantastic to see the UK at the forefront of myeloma treatment. 'We have been working very hard for the last year to get this treatment approved and we know it will transform the lives of thousands of people with myeloma.' Health Minister Karin Smyth said: 'This groundbreaking therapy puts the NHS at the forefront of cancer innovation. 'By harnessing cutting-edge 'trojan horse' technology, we're offering new hope to blood cancer patients across the country.'
The Guardian
an hour ago
- The Guardian
Sickle cell patients to have quicker and more accessible treatment in England
People living with sickle cell disease in England are to benefit from quicker and more accessible treatment due to a £9m investment, the government has announced. Apheresis services, which are a type of treatment that removes harmful components from a patient's blood, are to improve across England through the funding of more specialist treatment centres. The funding will ensure the wider availability of machines that remove a patient's sickled red blood cells and replace them with healthy donor cells. More than 20 NHS trusts currently offer Spectra Optia technology, a treatment more effective than blood transfusions and having been shown to be highly effective in reducing complications such as iron overload. The investment could save the NHS up to £12.9m every year thanks to a reduction in time spent in hospital for patients and the reduced need for other treatments, according to the government. Sickle cell disease primarily affects people from an African-Caribbean background. In England, about 17,000 people are living with the disease, an inherited blood disorder, with 250 new cases a year. Wes Streeting, the health and social care secretary, said: 'People living with rare conditions like sickle cell disease face immense everyday challenges, and can sometimes struggle to get the specialised care they need. 'To make our health service fit for the future, we have to harness the power of new technologies, and these machines provide a shining example of how our government is starting to make huge advancements in digital healthcare. 'Through our plan for change, this government will be the one that removes the barriers to getting the latest and best tech to our NHS frontline, so patients can access the best care available, closer to home.' Prof Bola Owolabi, the director of healthcare inequalities at NHS England, said: 'This is great news for people living with sickle cell disease – a condition that disproportionately affects Black African and Black Caribbean communities. 'Sickle cell patients have needed new treatment options for decades and this additional funding will provide greater access to this life-changing technology which has the potential to significantly improve patients' quality of life.' Owolabi added that sickle cell care in England continued to be among the best in the world, with England the first country to introduce a groundbreaking gene-editing therapy, which offers a functional cure to the disease. Sign up to First Edition Our morning email breaks down the key stories of the day, telling you what's happening and why it matters after newsletter promotion 'Alongside this important step, the recent approval of a new gene-editing therapy for patients with severe sickle cell disease showcases the NHS's clear commitment to improving outcomes for the 17,000 people living with the condition in England,' Owolabi said. John James, the chief executive of the Sickle Cell Society, said: 'We are delighted to see the arrival of this long-overdue funding, which will improve access to vital treatment for people living with sickle cell disorder and their families. 'This announcement follows years of collaboration between the Sickle Cell Society and the NHS, and we're pleased that this investment will help make access to care fairer, more consistent, and far less stressful for many individuals.'
Times
an hour ago
- Times
‘Trigger toolkit' for museums comes with its own warning
A guide that advises prominent museums on how to deal with sensitive topics including divorce, poverty and violence put a content warning on its own 27-page 'trigger toolkit'. The booklet was released by Museum Development North, which is a partnership funded by Arts Council England between York Museums Trust, the Manchester Museums Partnership, Cumbria Museum Consortium and North East Museums. The aim of the booklet is to 'support organisations working across the sector to take a practical approach to preventing, responding to and managing a triggering event within a training session'. The 27-page guide, called 'Trigger Toolkit', advises leaders in the heritage sector on how to prepare training content that will reduce the likelihood of staff being 'triggered' during their work with collections or artefacts. • Chocolat author Joanne Harris adds trigger warnings to her books Due to 'sensitive' topics, the training guide has two pages of warnings in large red type that states: 'The following two pages contain potentially triggering content.' People working in the heritage sector are exposed to collections that include 'racist and intolerant artefacts', which could bring back childhood trauma and prompt memories of 'offensive language and name calling', the toolkit states. Included among the more than 40 topics that could affect museum staff were death, divorce, childbirth, debt, violence, politics, classism and warfare. Gambling, hateful language, the climate emergency, disease, the criminal justice system, policing, and natural disasters were among other examples of 'possible triggering topics' included in the toolkit. The document cites 2022 research that describes a trigger as a 're-experiencing of unpleasant post traumatic stress disorder symptoms such as intrusive thoughts being evoked by the exposure to materials which spark traumatic memories'. Liz Main, a mental health policy expert who has studied trigger warnings, said: 'On balance I think trigger warnings can be a good thing as they can stop someone from seeing something that may upset them. However, the fact that the booklet is about trigger warnings would indicate to staff that there may be emotionally distressing content in there.' The toolkit was developed by Inclusive Boards in partnership with Museum Development Yorkshire. The guide states: 'Many artefacts and conversation subject matters relevant to the heritage sector speak to a time in which intolerant, discriminatory, and offensive attitudes and behaviours were significantly more prevalent than they are today … It is important that in navigating this history organisations ensure that equality, diversity and inclusion is a priority.' Museum Development North had no further comment.
