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BBC News
14-06-2025
- Health
- BBC News
Angelman syndrome: Mum does press ups to help her care for son
The mum of a disabled five-year-old does press ups every morning in order to be able to care for him but is scared of what will happen when he gets too big to manage alone. Ivor has Angelman syndrome, a rare genetic condition that affects the nervous system and causes severe physical and learning mum Sarah, from Monmouth, is among 310,000 unpaid carers in Wales and a recent report found "serious gaps" in how care is valued, supported and delivered across the country. The Welsh government said it was vital for parents to get the support they needed. Ivor's condition affects about one in every 15,000 people and means he needs constant supervision, struggles to sleep through the night, cannot speak, understand the word "no" and is not toilet trained. Sarah, 44, said he was a happy, growing boy who loves to cuddle, walk and play, but she needed to stay fit to keep her strength up as he gets bigger. She said: "I actually already feel I'm almost at max, which is pretty damn frightening given I'm only two years into this this whole new world." Some with Angelman syndrome end up needing two strong carers with them all the time, which seems "extravagant" she said, until you see what it takes to keep them said: "I'm just taking it a month at a time, but there is going to come a point where we're going to have to ask for extra help in that respect." "The longer I can do that, the more Ivor can develop, the more I can guide and help him to actually learn to use a step, to get in and out of the bath. "So Ivor and I are kind of like blossoming together and trying to find our own way because we just have to," she said. Sarah said continuing to work as a solicitor had given her a sense of balance and stopped her from becoming "saturated" by her son's disability and what may lie ahead."Everything had been pretty run of the mill pretty normal, very joyful and then you think, 'Oh, my goodness, this is a parallel world like I had no idea existed'."She was suddenly "carer" and had to deal with a myriad of hard-to-navigate forms for medical and social care. "It's like a bomb hit, and I'm fairly on it," she laughed. "The amount of stuff you've got to do... medical appointments, or just extra stuff like forms to fill in, grant applications, blue badge applications."She described disability living allowance forms as a "complete headache", particularly on top of caring responsibilities and looking after the rest of the family. Sarah said she had a "deep sadness" for her daughters, Bethan, 11, and Olwen, seven, and worried they get less time with their parents. "Ivor pinches, he bites and pulls and messes things up... he's not a normal brother," she said, adding her daughters are also his carers and give her "emotional support".Ivor is now in primary school with his sisters which Sarah said has "helped tremendously" in managing her work and administration of her son's care. Sarah has scaled back her career as a solicitor to part-time, saying caring for Ivor was a full-time job. "He will always need me, and in weird way that that fills me with joy at the same time as worry, because I will always have a real purpose in my life."She said the one thing she would change would be the "black horror" of a three-year wait for Ivor's diagnosis, and as a campaigner for Foundation for Angelman Syndrome Therapeutics (Fast) has called for a heel prick test for genetic conditions in all babies. She has been joined in these calls by former prime minister Lord Cameron, and said an earlier diagnosis would have given Ivor access to "crucial" therapies. How to help carers? Sarah said Ivor's use of touch and eye contact as communication could be intimidating for once you get to know him, as many people do in Monmouth where she and Ivor often walk around town, they find an "innocent nugget of joy", who has had a profound effect on Carers Trust said three in five people would be a carer at some point in their lifetime. A survey of 2,3000 UK families raising disabled or seriously ill children by the charity Family Fund found 44% struggled to meet day-to-day living costs, despite receiving disability benefits. Responses from more than a quarter suggested signs of clinical depression. Family Fund gave financial help to Hannah Leonard, 41, a social care worker looking after a her severely disabled daughter Darcy, six, in Rhyl, has achondroplasia, a bone growth disorder that causes is autistic, with epilepsy and dysphasia, which makes it difficult for her to talk, and also has no sense of danger. She is already nearly as tall as her mum. "There have been incidents where she has slipped my hand, and she has ran towards an main busy road, and I literally thought, 'I'm gonna lose her here'," she said. "Luckily, the grace of God or whatever it was, she turned."There's no rest time, our doors have to be locked because she's looking for food or she's trying to climb," Hannah said. "You're always on high alert."Parents of children with autism or neurodiverse children have stress levels proven to be that of a combat soldier." Hannah said her pension-age mum still help with the "things I can't do" and they got "very little help" from the NHS or local said she had been waiting a year for a social worker and was paying £300 per month for private speech and language therapy, alongside 60-mile (97km) round trips to Liverpool for trampoline physiotherapy to help with her balance. "I think we will need assistance somewhere later on down the line," she said, adding Family Fund paid for a tablet device that helps Darcy to communicate. "Unpaid carers keep this country up," she said. A report published last week, the first of its kind in the UK, found serious gaps in how care is valued, supported and delivered across Cymru, the Bevan Foundation and Carers Wales published a review of how well Welsh government policies supported carers and care workers – both in adult care and said the care system was stretched to breaking point and that Wales falls short on the implementation of almost every aspect of care policy, with patchy progress, disjointed systems and too many people slipping through the keeps Wales running, it said, but many of those providing the care were struggling financially, had poor health and wellbeing and had to cut back on food and heating. The Welsh government said it was "vital" parents received the support they needed alongside health and social care systems. It said: "We've provided £5.25m this year to maintain our short breaks scheme which has enabled more than 30,000 unpaid carers to have a break from their caring role to pursue a hobby or enjoy a social activity, and the carers support fund which provides carers with emergency financial assistance." Additional reporting by India Pollock, BBC Wales social affairs correspondent
Wales Online
11-06-2025
- Health
- Wales Online
'I'm the mum of a disabled little boy – these are the things I want you to know'
'I'm the mum of a disabled little boy – these are the things I want you to know' Ivor Washbrook loves climbing trees and singing and dancing with his sisters. He also has a syndrome that will affect his whole life Sarah Washbrook with her son Ivor who has Angelman syndrome (Image: Sarah Washbrook ) Sarah Washbrook's little boy Ivor is funny, his smile is luminous, and he likes climbing trees and singing. He loves laughing and dancing with his sisters and is, his mum describes, "utterly and simply excited by life". The five-year-old also has Angelman syndrome – a neurogenetic disorder affecting about 1 in 15,000 people and approximately 500,000 worldwide. People living with Angelman syndrome have a genetic difference on their chromosome 15. In Sarah's words, it's normal to have two copies of chromosome 15 – one from each parent – but Ivor has two 'dad' copies of chromosome 15 meaning there is one small but important gene not functioning as it should. That is the gene which controls a protein involved in brain functioning that helps us walk, talk, and perform many other everyday tasks. People with the syndrome have significant intellectual disability, balance and coordination issues, motor impairments, and often experience debilitating seizures. Disruptive sleep and behaviour are serious challenges too. Some never walk and most are unable to talk. For our free daily briefing on the biggest issues facing the nation sign up to the Wales Matters newsletter here. Sarah, from Monmouthshire, already had two daughters – Bethan, now 11, and Olwen, now seven – when Ivor was born and she knew early on that something was different for him. He missed every milestone but she was repeatedly told it would be fine. Yet from the point of Ivor missing his expected first milestone of rolling she knew something was wrong. Article continues below Covid played a part in the delay of getting answers, because there wasn't the medical contact for mums in that period as there would normally be, but she had to fight for three years to get a diagnosis for him. "My heart was breaking," she said. "Something was wrong with my beautiful child. Some days I was hopeful – hopeful that perhaps he was just a late starter, just slow. But the reality was starting to crush down upon me even before we had a diagnosis – suffocating me, blacking out my world. Life as I knew it was crumbling around me." Even when he was diagnosed she felt unsupported. As she left the consultant's office having been told the name of the syndrome she was given a tissue in one hand and a leaflet in the other. She had no idea what would come next in terms of for her son, or how to cope, or what help she could get. Fighting for that diagnosis was tough and Sarah admits she went through a "deeply dark time". "I'm quite a strong woman but I was on my knees," she said. "I knew something profound was up, something really serious was at play, and I didn't know what it was. I felt helpless," she said. All that was while trying to maintain a sense of normality for her two daughters. She has struggled with a sense of grief after his diagnosis but the reason has changed over time. First it was for her daughters and how their lives would be affected, how they wouldn't get a "normal upbringing". Then her fears turned to Ivor and then to herself. "The strongest grief, and it sounds really selfish, but I felt really annoyed my life was going to be so different," she said. "Ivor is a really happy little boy. He has no medical problems per se – he's just built differently. "He doesn't know what is going on, but me? It's really, really hard. "When you have a child you think when they're 18 they'll go and you get your life back. When they're five or six you can read the paper again on a Sunday. "But Ivor needs everything doing for him and always will. "I get choked with fear and worry about how I am going to deal with it," she said. "It frightens me the sense of responsibility I will have on my shoulders but I worry about letting go at some point because I can't physically do it. "I am quite strong, physically able – I run and cycle most days. I can move him and manoeuvre him when he's trying to pinch me or pull my hair but am I going to be able to do that in 10 or 20 years? "I'm going to have to let someone else into my life to help with my child and that pains me more than anything," she said. Ivor is now five. He can walk, but not far or fast, and he struggles with his balance and coordination. He is non-verbal and frustrated when he can't communicate so lashes out physically sometimes. He is a terrible sleeper, which has repercussions for his family too. "Ivor still keeps me awake now like a newborn and he probably will forever and that's a really hard thing to come to terms with," Sarah said. Sarah is a property lawyer as well as lots of other labels – a wife, a runner, a mum, a friend, and more. Her life is the ultimate mum juggle. She is speaking as part of international carers' week to shine a light on what people caring for others do on a day-to-day basis. Ivor with his sisters. Bethan and Olwyn (Image: Sarah Washbrook ) Sarah wakes at 6am to work for an hour before her children rise and then she must get them out of the door to school. She specifically does daily press-ups so she can be physically stronger to carry her son. Once the kids are up she gets them all to school – including Ivor, who is at a mainstream school. She said: "I press shutdown on my work laptop as the children pour off the school bus – then it's round two. "Doing things that Ivor can't – which is pretty much everything – and pedalling backwards as he pulls the books off the bookshelf, yet again, empties the cereals over the kitchen floor, draws over the table. Entwined with more appointments, meetings, forms, calls. Being there for Ivor's sisters too. Holding everything together. "Everything is so much more complicated. We can't just pop into the supermarket. We can't just jump on the bikes for a family bike ride. Everything requires extra thought, more stuff, more money," she said. "I often question whether I can carry on working and caring but I know that there are huge benefits for me in working – a space outside Ivor in which I can be me. "I have no spare time for anything though. What about that survey or consultation? "What about Ivor's blue badge application? What about those endless DLA forms? "What about getting my discretionary trust in place? What about charity and advocacy work? "What about fighting for some respite? What about carving out precious time for Ivor's sisters? "I can go for days without even looking at my husband. And me? I'm afraid that's at the bottom of the list. "It's clear I'm at max but I find it so hard to ask for help. My husband is desperate to take the weight off my shoulders but even then I struggle. "It's complicated. I feel a deep sense of responsibility as a mother – a profound maternal need to protect and support my children in any way I possibly can. I would cut off my arms and legs and if I thought it would help. "Maybe I can't let go, maybe I can't admit that I sometimes can't cope, and then there's the physical challenge. Ivor can walk but not far or fast – and only if he wants to – and he struggles with his balance and coordination. "He's heavy, even as a five-year-old. I do press-ups every morning so I can carry on lifting him just for a bit longer. What will I do after this? It scares me. "He has a very short attention span so he never stays in one place for long – I can't take my eyes off him. "He can't follow instructions and doesn't understand the word 'no.' And there's much frustration because he's non-verbal so he pinches my face, pulls my hair, and sometimes bites me. Sarah is speaking as part of international carers' week to make people aware of the reality of being a carer (Image: Sarah Washbrook ) "Ivor is a terrible sleeper, which is a big part of Angelman Syndrome. It's the worst possible thing. Last night Ivor was awake for three hours and I have no idea why. When I sleep I can cope. When I don't I can't – it's as simple as that. All in all I'm pretty exhausted." The hardest thing of all isn't any of that, she said, but the grief she feels as the mum of a profoundly disabled child. "It still tugs painfully at my heart when I see Ivor's school friends launching into new life – such a stark contrast to my little boy. "Then there's the confusion and worry. This big new world of disability – how do I navigate it? "What do we need? How? The endless feeling that I should be doing more. "Ivor is so vulnerable and dependent – that weight of responsibility sits continuously and heavily on my shoulders, driving me to fight harder, and of course the bitter anger: 'Why me?' "Goodness knows what the future holds – it's so horribly uncertain. "I know I'll be caring until my last breath but I don't know how. I certainly don't want to feel that I'm fighting all the time – I don't want to be that person with a chip on my shoulder. "It's utterly exhausting but will I ever be at peace with the card I've been dealt?" It is not, though, all bad. "There are many golden moments when I think: 'I can do this – the colour and crazy joy, perhaps it's all happened for a reason'," Sarah said. "Ivor is an incredibly happy little boy, so utterly and simply excited by life, catching the funny side of everything, which helps us tremendously. He loves nothing more than social interaction whether that be laughing and dancing with his sisters or cuddling his way around a café. "Of course he can't do what other five-year-olds can such as climb a tree or sing a song. But he has a very good go at it. "Left to his own devices and with gentle pushing from us it's amazing what he can achieve. He has walked up Sugarloaf mountain near Abergavenny and scaled the steps of the Senedd Welsh Parliament to raise awareness of Angelman syndrome. "He started at our local mainstream school in September. "Whatever struggles we face I'm determined that Ivor's disability won't hold him back. I want our family life to be as normal and vibrant as possible, to carry on doing the things we love," she said. People will see her in Monmouth, holding his hand, as they do their shopping and will think one thing. But the reality is a mum, a carer, who is exhausted. She hopes there will be greater understanding of what being a carer means. "There's hundreds of thousands of us across the country but it's just not talked about," she said. The impact on her daughters was one of the biggest worries for mum Sarah (Image: Sarah Washbrook ) Being a carer has, she said, changed her life beyond recognition. "It's given me new friendships. Slowed me down. Made me appreciate the beauty of life, the simple things. "Stop. Look into those eyes. Hold that hand. "It's made me more compassionate, more focused on what's important to me, and it's also given me a real purpose. I live for my children – my most important job of all. "If we don't talk about it – the triumphs and the challenges – nobody will understand what it's like to have Angelman syndrome or to be a carer of somebody with Angelman syndrome. I don't want sympathy – well, maybe a bit – but I do need understanding. "I need people to understand why Ivor is the way he is. Don't back off when he touches your face, don't stare at him when he shouts. "I need my friends to understand why I'm too tired to meet up, that I'm not logging off at 3pm to go and have a cup of tea, why I can't answer work calls in the evening, why I'm so hopeful for treatments for Angelman syndrome, why I'm fighting for the recognition and support that parent carers deserve. "I'm also hoping that my words will resonate with many parents and carers out there. Nobody understands better than somebody going through the same thing. "I just have to look at another Angelman mum, to understand, without even the need for words. This shared experience is crucial. We need to work together, help each other. Ivor has global developmental delay. Now five, he has the mental capacity of a child aged around one (Image: Sarah Washbrook ) "It's this community strength that will help us achieve good things. Support. Knowledge. Education. Inspiration. Hope. Life-changing medical treatments for Angelman syndrome. This is all within our reach. Together we can do it. "This journey as a carer and mother is not like that and it never will be. There are huge challenges – some that I've faced already and I know many more to come. One step at a time. "Life is spinning off in a new direction. I'm determined to embrace that, to turn it into something positive and do everything I possibly can to make sure that it's as brilliant as it possibly can be. "It's so complicated yet Ivor makes it so simple. "I cry but he makes me laugh. I feel like my wings are clipped yet I feel energised, determined to use my voice where Ivor can't, poised to fly. Article continues below "It's certainly a life of extremes with huge joys every day and that's what keeps me going. With strength, love, and a smile everything is possible." To find out more about FAST UK (Foundation for Angelman Syndrome Therapeutics) go here. Carers' week runs from June 9 to 15 and you can find out more here.
Indian Express
03-06-2025
- Entertainment
- Indian Express
Ananya Panday's cousin Alanna Panday wants to name her future kids after ‘water bodies', her son's name is River: ‘Let's name the next one Coast'
Ananya Panday's cousin sister and influencer Alanna Panday and her husband Ivor McCray are over the moon, embracing their new journey of parenthood. After welcoming their baby boy River last year, the couple has been sharing interesting vlogs of their everyday life. With over 1.6 million subscribers on YouTube, they recently posted a vlog of planning River's first birthday, meeting the family in Mumbai, and plans to name their future babies. In the video, Ivor mentioned that his wife Alanna wants to name her future kids after 'water bodies'. 'Alanna the other day told me that she wants to name the next baby 'Coast'. And, I nearly shut down the idea. There's no way we are having a Coast and a River,' he shared with the viewers. Citing examples of what names they could shortlist, she smiled and replied, 'It's so cute. Imagine if all are babies were named after water bodies, like River, Coast, Mile, Flow. Nile is a cool name.' Ivor instantly jumped and said, 'Stream! It's great, let's do that.' ALSO READ | Ananya Panday's cousin and her husband are making so much money through YouTube and Instagram, they won't have to work ever again after five years 'Stream is a little odd. A stream reminds me of a pee stream,' Alanna joked, as Ivor concluded the conversation by saying, 'I think they are all bad. I like River the most and we are going to stay away from all other water bodies moving forward.' Later during the day, Ananya Panday and her sister Rysa visit their house to meet little River. While the infant was trying to walk on his own using the walker, everyone cheered for him. Soon after that, the Call Me Bae actor tried to feed him food excitedly calling him adorable baby names. 'That was so fun,' she said. River happily had his meal and went to sleep after a tiring day. During the rest of the vlog, Alanna Panday and Ivor McCray were busy planning their son's first birthday with the former's mother Deanne Panday. They were hunting for a venue and planning the theme for the intimate celebration with the family. Ivor and Alanna tied the knot in 2023, and welcomed their first child in July, 2024.
News18
13-05-2025
- Entertainment
- News18
Alanna Panday And Ivor McCray's Main Source Of Income Is…
Published By : Trending Desk Alanna Panday and Ivor McCray revealed details about how they plan their finances and what their primary source of income is. Alanna Panday, the cousin of actor Ananya Panday, has opened up regarding the income she and her husband, Ivor McCray, generate from creating online content. Ivor had previously said that if they kept going in the same direction, they won't ever need to work again in their life. Following up on the video in which they made these comments, Ivor claimed to have quit his job, while Alanna referred to him as the family's 'money police." The couple addressed more fan enquiries in a recent video that was uploaded to their YouTube channel, such as what sources of income they had outside of content production. 'There's a lot of stuff we do to earn money. Mainly, it's investments in crypto and stocks. We have a financial advisor who takes care of this stuff for us," Ivor said. After which Alanna added, 'Our main source of income is content creation and brand deals. The goal is to take those brand deals and make them passive income by making a portfolio of investments." Watch the video here: According to Ivor, they invest the remaining portion of their monthly income and only spend 50 per cent of it. 'I'm happy Ivor is like that. Because I can be (the one buying bags). He's the money police. He makes sure that half the money we make is put away for when we're older, and when River goes to a good college and has a good life," Alanna stated. Even though Ivor worked as a festival designer in the past and collaborated with some of the biggest musicians in the world, he stated later in the video that he has left his job to concentrate on content creation. Speaking on how much they earn together, Alanna said, 'Being together, we soon realised that by doing this social media thing together, we are making two times, if not three times, what we would make separately." In an earlier video, Ivor mentioned that he learnt to be frugal from his grandfather. Alanna Pandey and Ivor McCray married in March 2023, and they welcomed their first child in 2024. They primarily live in Los Angeles with their son, River. First Published:
Indian Express
13-05-2025
- Entertainment
- Indian Express
Ananya Panday's cousin Alanna and her husband Ivor are making ‘three times the money' by joining hands than they did separately
Actor Ananya Panday's cousin Alanna Panday, recently revealed details about the income she and her husband, Ivor McCray, generate as content creators online. Ivor said that if they continue on the same trajectory, they wouldn't have to work ever again in their entire lives. In a follow-up to the video in which they made these comments, Ivor said that he has quit his job, while Alanna described him as the 'money police' of the family. Alanna and Ivor tied the knot in India last year, but primarily live in Los Angeles. They have one son, River. In a new video posted on their YouTube channel, Alanna and Ivor answered more fan questions, including what streams of income they have besides content creation. Ivor said, 'There's a lot of stuff we do to earn money. Mainly, it's investments in crypto and stocks. We have a financial advisor who takes care of this stuff for us.' Alanna added, 'Our main source of income is content creation, and brand deals. The goal is to take those brand deals and make them passive income by making a portfolio of investments.' Also read – Ananya Panday's cousin and her husband are making so much money through YouTube and Instagram, they won't have to work ever again after five years Ivor said that they spend only 50% of their income every month, and that the rest is invested. 'I'm happy Ivor is like that. Because I can be (the one buying bags). He's the money police. He makes sure that half the money we make is put away for when we're older, and when River goes to a good college and has a good life.' Ivor said that he has quit his job to focus on content creation, despite having collaborated with some of the world's biggest music artists via his old job as a festival designer. Alanna explained, 'Being together, we soon realised that by doing this social media thing together, we are making two times, if not three times, what we would make separately,' she said. In their earlier video, Ivor said that he learned to be frugal from his grandfather. 'The goal is that, within five years, if we're on the right path, we wouldn't have to work again if we didn't want to. This ideology was passed down to me by my father and grandfather. My grandfather was actually a very wealthy man, but nobody knew. He would wear the most raggedy clothes and drive a beat-down car, and the guy was a millionaire. He came from a lot of wealth, but didn't want that lifestyle for his kids. He never wore his money. He told my dad, and my dad told me,' he said.
