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Gwynedd teen to walk Yr Wyddfa four times for defibrillator fundraiser

Gwynedd teen to walk Yr Wyddfa four times for defibrillator fundraiser

Gabriel McKenzie, 19, from Coed y Brenin, will start the challenge at 6pm on Wednesday, June 4.
His fundraiser target is £2,000, while Gabriel said, if he has time, he may complete more round trips of the mountain range – www.gofundme.com/f/yr-wyddfa-24hr-challenge.
He works as a groundsman in Dolgellau; at the Penmaenuchaf Hotel.
Gabriel, who so far has raised in excess of £200, said: 'The target is four round trips, but it would be amazing to do as many as I possibly can, depending on how I'm feeling.
'I'm doing it solo, but there'll be a support group on standby to help me, which Dolgellau Fire Station is helping to organise, and one of the mountain rescue teams will know about it in case anything goes wrong. My uncle will be at the bottom of Yr Wyddfa, as well.
'I just think a defibrillator is a good thing for any community to have. Having been to two defibrillator open days and demonstrations, I know it's a lifesaving piece of equipment.
'I think it's quite important that there are as many of them around as possible – it's better to have one and not need it, than need one and not have it.'
Gabriel is no stranger to Yr Wyddfa, having walked it many times previously.
This includes when he completed the National Three Peaks challenge in 22 hours last October.
He added: 'I enjoy it, but it was a bit of struggle when I did it for the Three Peaks because I got there at about midnight and had lost one of my AirPods at the top of Scafell Pike, and the weather wasn't in my favour!
'I'm hoping it'll be mild this time – not too hot, not too cold.'

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‘My daughter only knew hospitals until I had a son whose bone marrow saved her life'
‘My daughter only knew hospitals until I had a son whose bone marrow saved her life'

Telegraph

time4 days ago

  • Telegraph

‘My daughter only knew hospitals until I had a son whose bone marrow saved her life'

'I've been thinking a lot about health privilege lately,' says Mina Holland, 'and I absolutely don't take good health for granted any more.' We are sitting in the garden of her house in Tulse Hill, south London, not far from where she grew up. It's a poignant anniversary for Holland. Six years ago today, her life changed forever when a routine check-up at Lewisham hospital turned into an emergency. Her 11-week-old daughter, Vida, was admitted for an urgent blood transfusion. 'I've never seen a baby with haemoglobin levels this low,' one doctor said. Holland is an author, journalist and occasional restaurant and wine list consultant, as evidenced by her large open kitchen, with its amply stocked wine rack and a pyramid of Mutti Polpa – the connoisseur's tinned tomatoes – by the back door. She has just baked some deliciously sticky cookies, which we take into the garden to eat. Her husband Freddie, a sound engineer, is at work; Vida and her four-year-old brother Gabriel are at school. Before that hospital trip in 2019, looking after Vida had been a struggle. Despite her frequent crying and pallor – people complimented her porcelain skin – the couple had no real idea anything was wrong. She wasn't an easy baby: a fussy feeder and an erratic sleeper. But they were first-time parents – what did they know? When they were first told about Vida's haemoglobin levels, they assumed it meant she was severely anaemic. But it soon became clear that it was more serious than that. Vida received a blood transfusion over four days – there's only so much you can give at once – and after just one instalment, the change was remarkable: her colour returned and she fed with gusto. The family took her home and tests began to investigate the cause of her anaemia, which could have stemmed from a number of things. They were vastly relieved to learn it wasn't blood cancer – but unsettled by the emerging discussions around 'bone marrow'. The effects of the transfusion soon wore off. Four weeks later, Vida's haemoglobin levels had dropped again, and her symptoms – poor appetite, restlessness, pallor – had returned. Holland was floored, watching her baby decline. But as a journalist, she threw herself into the research, typing in symptoms and exploring every possible avenue in search of a cause. She was becoming desperate. One condition Holland came across was extremely rare – but it seemed to match all of Vida's symptoms: Diamond-Blackfan anaemia (DBA), a genetic blood disorder in which the bone marrow fails to produce enough red blood cells. DBA affects only five to seven children in a million. But that's what it turned out to be, as the family discovered on a bleak day in July, when Vida was five months old. Neither Holland nor Freddie carry the gene for DBA, they would later learn, and the odds of Vida having it were infinitesimal. It felt like a life sentence of anxiety and grief. As well as an inability to produce sufficient red blood cells, DBA is associated with a predisposition to certain cancers and the risk of other abnormalities. Treatment pathways vary – a lifelong course of steroids or a bone marrow transplant were possibilities for the future – but in the short term, it meant regular blood transfusions, roughly every three weeks. Each time, a cannula had to be inserted into the arm of a screaming baby – often requiring both parents and three nurses – followed by a painstaking effort to keep her still for the next three hours. Holland has now written a book about these early years, called Lifeblood, which gives a visceral impression of the emotions they went through at the time; firstly the worry and uncertainty, followed by incomprehension, then the fear and grief at what they – and Vida – were facing for the rest of their lives. 'I'm really lucky in that we had a very favourable set-up,' she says today. 'Our parents are around, my mother-in-law is a psychotherapist, we've got access to all the top-notch children's hospitals. But I still just felt very, very alone.' Friends did their best, but she came to resent their platitudes. 'I can't tell you what would have helped – I think I just needed to be met in the despair, at that point.' There were endless hospital visits and life gradually reshaped itself around this new reality – DBA was all Holland could talk about. She couldn't work. She couldn't even watch TV. Every aspect of their lives was dictated by Vida's condition. They sold their flat – it felt like 'a crime scene', she writes – and moved in with Louise, Freddie's mother, whose home was near St Mary's Hospital in Paddington, where Vida was being treated, as well as the Evelina Children's Hospital at St Thomas's, south London. Vida was doing well on the transfusions – Freddie described her as 'full of life, but not haemoglobin' – but difficult questions loomed about the future. Around the age of one, she would become eligible for a steroid treatment: prednisolone, given initially at a high dose to jolt the bone marrow into producing red blood cells, then gradually tapered down in the hope it would continue to work at a sustainably low dose. This could mean an end to transfusions – but long-term, low-dose steroids are only effective in a minority of cases. The alternative was lifelong transfusions, which would not only severely limit her mobility but also require further treatment to manage the iron overload they cause. There was a third possibility: the bone marrow transplant. 'The idea of a bone marrow transplant just sounded wild,' says Holland now. 'Before this, bone marrow was a dish at the restaurant St John. Or something that I remember the dogs gnawing on at my grandmother's house. It just sounded so technical and so terrifying. And the idea of the complete destruction of the immune system in order to make your child independent of three-weekly hospital visits, was mind-boggling.' In a bone marrow transplant, the faulty marrow is replaced with healthy marrow from a matched donor, offering the possibility of a haematological cure. Graft-versus-host rejection can occur, though the risk is significantly lower if the donor is a family member, especially a sibling. (It is extremely rare for parents to be a match, and neither Holland nor Freddie were suitable donors.) Preparation for the transplant involves complete isolation and a course of chemotherapy and other drugs designed to destroy the immune system. Before Vida's DBA was even confirmed, Holland was convinced that transplant was her best option. 'I don't want illness to be her life's focus,' she writes. 'I wanted her to have all the freedom of movement and mind that healthy children and adults have.' In early 2020, Holland found out she was pregnant again. She and Freddie had wanted a second child anyway, 'and I really am keen to emphasise that he was never designed to be a saviour sibling', she says. The chances of that child being a match for Vida were one in four, and initially Holland had considered IVF to try to engineer this. 'But it was going to cost so much money, and the chances of it working were tiny. So we thought, well – one in four, let's try. We wanted another child, and if there was any way they could help, brilliant. 'Our second child will not be a 'designer baby',' Holland writes. 'Our child will be a much-loved family member who happens to have a trait that could help their sister in a way no one else could. We want to give Vida the best chance we can.' Gabriel was born in the winter of 2020, and in January 2021 they received the phone call – Gabriel did not have DBA. The relief was immense. 'A geneticist would say that because we already had a child with it, yes, the chances were higher, but actually based on probability it was a very low chance that he would have it as well. But obviously we were still scared.' A month later she and Freddie were informed that, should a transplant be warranted, Gabriel was a match for Vida. They were cautiously euphoric. 'When we found out that he was a match, it became a bit of a no-brainer. It was a big decision to go ahead with the transplant, because it's high-risk, but around that time the advice was changing: when she was diagnosed as a tiny baby, what we were hearing from the other parents in the DBA community and from her doctor, was this is not a decision you take lightly – it's dangerous, it's a year out of mainstream life, and there are a lot of things that could go wrong. Two years later, new research showed much better outcomes, both from donors who are related and not, and that the quality of life outcomes for kids who had had transplants were quite favourable compared to living on blood transfusions. 'I feel apprehensive about saying this because I know that there are lots of parents with children who are on transfusions, who are leading rich lives, but I know it's not easy.' In March 2023, Vida had her transplant, with bone marrow donated by her brother. Their parents did not underestimate the emotional implications of this. 'We have told Vida that Gabriel is 'sharing some of his blood with her',' Holland writes in Lifeblood. 'She is concerned about him 'going to sleep'; having his blood removed; we tell her that he has lots of it and that he won't remember […] Until now, Freddie and I have minimised the significance of what he will have to endure – the many blood tests, the general anaesthetic, the soreness in his lower back where the bone marrow will be taken, and the consequent anaemia which will require months of iron supplementation […] we are signing up our baby for the possibility of pain and distress. This doesn't sit comfortably.' In anticipation of the transplant, Vida had spent weeks in hospital, and had a Hickman line fitted through which to administer her 'conditioning treatment' – a cocktail of meds, including the chemotherapy, which inevitably made her ill, and caused her to lose her hair. But the transplant was a success. Gabriel's stem cell donation was 'abundant', her doctor informed them, and the new cells established successfully. She remained in hospital for five-and-a-half weeks as her immune system was non-existent, whereas Gabriel was sent home the following day and made a very quick recovery. When Vida returned home, there were restrictions. She had to take nine different medications four times a day; she had a controlled diet and could only drink boiled water. 'Every aspect of her day is monitored, curated, limited somehow,' writes Holland. Vida is six now, and flourishing. She started school midway through her reception year and is doing well, though she still has many hospital appointments. DBA makes her susceptible to certain cancers, so she has to be careful with sun protection, and she'll be on penicillin for life. Gabriel is sometimes jealous of these precautions and asks for medicine too. 'She's the patient, and it's obviously been hardest for her, but it's also been tough on Gabriel – in different ways. After the transplant, she often had to be readmitted, and we'd have to leave at a moment's notice to go to A&E at St Mary's. That was really hard for him; he was only three.' Vida hasn't questioned the constant hospital visits, Holland says. It's all she knows. 'I spent so long grieving that she was not going to have a normal life, that we were missing out on all the school activities and the swimming lessons – I was so worried about all that, but there have been aspects of it that have been quite wonderful, and I don't say that lightly.' Remarkably, Holland says, 'Vida loves going to hospital now. She used to get very frightened about the blood tests, it was traumatic for her and for us, but when I look at it as a whole, hospital has been a place where she gets focused time with one or both of her parents, she gets a lot of adult attention, she gets art therapy, she gets music therapy, she gets lots of presents. There have been rich moments too as well as very long, very empty, uncertain and frightening days. 'I think that how Vida's trauma is expressed will obviously evolve over time, and I feel I need to be quite alert as to how things could come out for her as she gets older.' At Easter, Vida's school put on an 'Eggstravaganza' where all the children were asked to make a diorama featuring hard-boiled eggs. 'I said, we've got to win this – let's make the hospital.' So they created 'Egg-elina Children's Hospital', based on the Evelina, with yolk transfusions and an 'eggs-ray'. And Vida won. The idea of the book came up while Holland was pregnant with Gabriel. 'I wrote it in a very sort of stolen-moments way, over about four years. The original plan was for it to be about Vida's first year, and finding acceptance, accommodating the unexpected. When things feel really bleak, it's hard to see how any good can come of them, but I know a lot of good has come from what happened. 'Even with the transfusions, I am glad those days are over but I look back on them fondly because I felt so held – particularly in the early days when I was always trying to second guess how she was doing, what her blood count was; I was always gazing at her face and ears and lips, trying to work out how anaemic she was. But when she went into hospital, I was sharing the responsibility. Obviously I wish that Vida hadn't had to go through what she has, and we could have been spared it – but it's sort of all I know now. I've been rewired.' In the UK, one in 25 babies is born with a genetic condition of some kind, and Holland's book will resonate with other parents facing similar challenges. Writing down what happened really helped, she says, 'and having a sense of – it sounds like a cliché – but being able to take control of the story. It was good to put it in my own words; I often don't know how I feel about things until I've written them down.' She is full of gratitude for the NHS. 'The biggest takeaway is just how hugely lucky we are to have the NHS, and what a precious thing it is. It's been incredible. I would love to know what Vida's medical bill is after six years of this; even the chelation medicine she had to have while she was on transfusion was well into five figures a year.' What people can do to help, she says, is give blood. Her book is out, inadvertently, just after World Blood Donor Day, which is on 14 June. 'For an hour spent in a blood donor centre you can save up to three lives. And in order to maintain blood supplies, 140,000 first-time donors are needed every year. 'I would just like to convey that it is an easy thing to do – having watched countless needles go into Vida, I've probably become hardened to it – and it has profound benefits for society.' How does she feel about Vida reading about herself in Lifeblood in the future? 'I feel quite guilty about the fact that for her first year I was just so sad, and I've been worried about what she might experience reading that. But I like to think that what comes across is extreme love.'

Cheltenham boy's storytelling method helps others with literacy
Cheltenham boy's storytelling method helps others with literacy

BBC News

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  • BBC News

Cheltenham boy's storytelling method helps others with literacy

A mother and son's storytelling ritual is helping to transform how children learn to write and express themselves through their own 11-year-old son Gabriel, from Cheltenham, would tell her his story aloud as she took notes and it was later turned into a book - called The Adventures of Gabriel. The framework they used was trademarked as said Gabriel is "proud" of how StoryQuest has since been inspiring others and hearing how they have been "slaying UFO's and beating dragons" in their own Hirst, a teacher at Dixon Manningham Primary School, in Bradford, said it has given his pupils, who often struggle with writing, "joy". StoryQuest is described as a therapeutic storytelling tool where the child relays a narrative, normally based on a hero, to someone who then actualises it into a fully formed implemented in schools, pupils share their story ideas with their class and write them down on a specialised Hirst said the method allowed his Year Six students to just focus on "enjoying using their imaginations"."We sometimes forget about writing for pleasure and what that can do for our kids," he said."A lot of boys and girls have a fear of the blank page, you can do all of the teaching - but they sort of shut down when asked to write a story."[So] it was a really lovely experience to see them really joyful, talking about their stories - they loved it."Mr Hirst has now built the method into his curriculum to be used every year. Kate described her role in her son's storytelling as like being her son's "ghost writer"."He just began narrating and I scribbled notes and asked him to tell me more," she added."I then read it back to him and he would feedback his edits."It all got put into a word document and I showed it to Gabriel and he said 'it's a book. Mummy it's a real book'." Since developing the method, Kate said it had been exciting to see how StoryQuest has been supporting pupils in building their confidence, emotional literacy, and writing skills."Gabriel is most proud of how his book and StoryQuest is inspiring other children," she said. "He's enjoying other children collectively taking on literacy and writing for each other."Kate and Gabriel now work together leading sessions with learning groups and pupils across the UK on how to use their StoryQuest method.

Arsenal in advanced contract talks with Gabriel
Arsenal in advanced contract talks with Gabriel

BBC News

time29-05-2025

  • BBC News

Arsenal in advanced contract talks with Gabriel

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