Latest news with #Make-A-WishUK
Daily Record
22-05-2025
- Entertainment
- Daily Record
Scots schoolboy told he wouldn't live past first birthday granted sweet Spider-Man wish
A Scots schoolboy who was told he wouldn't live to see his first birthday but continued to overcome the odds has received a Disney Wish to met his superhero idol Spider-Man. Max Farmer, from Perth, was born healthy but then diagnosed with spinal muscular atrophy (SMA) type 1 – a rare and genetic condition that causes progressive muscle wasting - when he was just nine weeks old. Doctors told his heartbroken parents he wouldn't live beyond 12 months. However, Max soon became the first child in Scotland to receive a groundbreaking new treatment. Last week, the now eight-year-old's dream came true when he had a private meet-and-greet with Spider-Man at a special Make-A-Wish UK event in partnership with Disney. Mum Elaine Donoghue, 48, told the Record: "It was absolutely magical and Max was so captivated by the characters he saw. It was such an inspirational and magical experience for our whole family. "We had no idea he'd get to meet Spider-Man one-on-one. He showed him his Spidey moves and even introduced him to Strictly's Amy Dowden, it was unbelievable." The event at Hoar Cross Hall Hotel in Burton-on-Trent was a specially designed experience for children with life-limiting conditions. It was made possible through a referral from CHAS (Children's Hospices Across Scotland), where Max receives respite care through Rachel House in Kinross. At nine weeks old Max stopped moving which led to the diagnosis of the condition that not only affects muscles in the arms and legs but also those needed for breathing and swallowing. It was then Max was offered a place on a new drug trial just weeks later, becoming the first child in Scotland to get the Nusinersen (Spinraza) treatment through an expanded access programme. Elaine said: "We were told he wouldn't make it to his first birthday. It was heartbreaking. "He went through 21 lumbar punctures in five years, but it gave him a chance at life." Now, Max is on a daily oral drug called Risdiplam, which means he no longer needs hospital stays or general anaesthetic to receive treatment. Despite needing 24/7 care, Max is full of life. He goes to school every day, uses a power chair, and receives constant support from mum Elaine, dad Stewart, 47, and big sister Beth, 17. Elaine said: "His day starts at 6.30am with medication and feeding, but he never complains. He's got a huge team around him, and he just takes it all in his stride. "There are no words to describe what the experience done for us as a family. We wouldn't even be able to take him to Euro Disney in Paris, due to the equipment and meds, it would be unachievable. 'But this event was fully accessible. There were profiling beds, hoists, proper changing places – everything we needed. They covered everything. "It was a dream come true for him to meet Spider-Man and we made memories which will last a lifetime." Max, who is under the care of nearly every major hospital in Scotland, continues to defy expectations. "He's just incredible. He's happy, he's funny, he loves school - and he's living his best life, in the way he can. We are exceptionally lucky to be able to call ourselves his parents." Join the Daily Record WhatsApp community! Get the latest news sent straight to your messages by joining our WhatsApp community today. You'll receive daily updates on breaking news as well as the top headlines across Scotland. No one will be able to see who is signed up and no one can send messages except the Daily Record team. All you have to do is click here if you're on mobile, select 'Join Community' and you're in! If you're on a desktop, simply scan the QR code above with your phone and click 'Join Community'. We also treat our community members to special offers, promotions, and adverts from us and our partners. If you don't like our community, you can check out any time you like. To leave our community click on the name at the top of your screen and choose 'exit group'.
BreakingNews.ie
27-04-2025
- Entertainment
- BreakingNews.ie
‘Heartwarming' Sam Ryder sings with critically ill children at Disneyland Paris
Eurovision star Sam Ryder has said 'one of the most meaningful and heartwarming things I've ever done' has been singing with critically ill children at Disneyland Paris. Ahead of the performance on Saturday, the children joined Ryder at the AIR Studios in Hampstead, London, to rehearse the song Viva La Musique, before going on to perform in France at the theme park. Advertisement Jax Morris, who was diagnosed at the age of two with a rare genetic blood disease and lives in North Ayrshire, Scotland and Kent-based Molly Townsend-Blazier, who was diagnosed with lymphoblastic leukaemia, were among those performing. Sam Ryder at the launch of the Disney Music Festival at Disneyland Paris (Daniel Kennedy/Disneyland Paris/PA) The two nine-year-olds were joined by Habiba Konate Naim, 13, from Greater London, who is living with genetic condition Williams Syndrome and has had a life-saving kidney transplant, and Eve Wilson, 16, from the south coast of England, who is undergoing treatment for a brain tumour. 'Singing with these amazing kids was honestly one of the most meaningful and heartwarming things I've ever done,' Ryder said. 'They met as strangers, and it was a joy to watch them become friends as we bonded over the power of music and singing. The whole experience was so pure, and it's been a real honour that I will cherish forever.' Advertisement Molly Townsend-Blazier, nine, participated (Daniel Kennedy/Disneyland Paris/PA) The Make-A-Wish UK supporter said the charity is 'the best of humanity.' He added: 'It transcends everything – politics, beliefs, all of it. It's only good. It brings out the best in everyone, and I just feel so lucky to be around that energy.' Ryder said that 'getting to meet and hang out a few weeks' while rehearsing with the children helped break 'the ice so we could just sing, dance, and enjoy the moment together'. He said: 'The main thing was making sure it felt like their day, building those bonds between them. Advertisement 'If music was just the backdrop for all of that, then I'm humbled and honoured to have been part of it. They're amazing people — pure beauty, honestly.' The performance in front of the Sleeping Beauty Castle at the launch of the Disney Music Festival came ahead of World Wish Day – which takes place on Tuesday – and was a collaboration between Disneyland Paris, charity Make-A-Wish and Ryder. Sam Ryder at AIR Studios in Hampstead, London, during rehearsals (Daniel Kennedy/Disneyland Paris/PA) Eve recently received a place at dance college, ahead of her GCSEs, and said her 'dream's always been to perform at Disney, and it's happening'. Molly's father Ian said: 'At first, we thought we only had months with her. Advertisement 'We had to wait a week for further tests, and eventually they confirmed it was leukaemia. It's been a challenging journey over the last two and a half, three years, with quite intensified chemo every day.' When Jax was four, he underwent chemotherapy and a bone marrow transplant and then had complications, viruses and autoimmune encephalitis, which the NHS says is a serious condition leading to swelling of the brain. This caused brain trauma and mobility impairments, but he is determined to try to walk again, and is still in and out of hospital, according to the charity. Disney and Make-A-Wish have worked together for 45 years, bringing children more than 165,000 wishes around the world and some 20,000 at Disneyland Paris. Advertisement Ryder represented the UK at the 2022 Eurovision Song Contest, coming second with the single Space Man. He was nominated for an outstanding original music and lyrics Emmy in 2023 for co-writing Fought & Lost, featuring Queen guitarist Sir Brian May, for the hit Apple TV+ series Ted Lasso.
Daily Record
27-04-2025
- Entertainment
- Daily Record
Critically ill Scots boy performs with Eurovision star Sam Ryder at Disneyland Paris
A critically ill Scots boy was among a group of children who performed alongside Eurovision star Sam Ryder at Disneyland Paris. Jax Morris, 9, from North Ayrshire was diagnosed at the age of two with a rare genetic blood disease. When he was four, he underwent chemotherapy and a bone marrow transplant and then had complications, viruses and autoimmune encephalitis, which the NHS says is a serious condition leading to swelling of the brain. This caused brain trauma and mobility impairments, but the brave youngster, who spends time in and out of hospital is determined to try to walk again. He was one of a group of children invited to perform at the theme park in France alongside Sam Ryder by the Make-A-Wish UK charity on Saturday. Ahead of the performance, the children joined Ryder at the AIR Studios in Hampstead, London, to rehearse the song Viva La Musique. Alongside Jax was Molly Townsend-Blazier, from Kent, who was diagnosed with lymphoblastic leukaemia , Habiba Konate Naim, 13, from Greater London, who is living with genetic condition Williams Syndrome and has had a life-saving kidney transplant, and Eve Wilson, 16, from the south coast of England, who is undergoing treatment for a brain tumour. Sam, 35, said the performance was "one of the most meaningful and heartwarming things" he has ever done. He shared: 'Singing with these amazing kids was honestly one of the most meaningful and heartwarming things I've ever done. 'They met as strangers, and it was a joy to watch them become friends as we bonded over the power of music and singing. The whole experience was so pure, and it's been a real honour that I will cherish forever.' The Make-A-Wish UK supporter said the charity is 'the best of humanity.' He added: 'It transcends everything – politics, beliefs, all of it. It's only good. It brings out the best in everyone, and I just feel so lucky to be around that energy .' Ryder said that 'getting to meet and hang out a few weeks' while rehearsing with the children helped break 'the ice so we could just sing, dance, and enjoy the moment together'. He said: 'The main thing was making sure it felt like their day, building those bonds between them. 'If music was just the backdrop for all of that, then I'm humbled and honoured to have been part of it. They're amazing people — pure beauty, honestly.' The performance in front of the Sleeping Beauty Castle at the launch of the Disney Music Festival came ahead of World Wish Day – which takes place on Tuesday – and was a collaboration between Disneyland Paris, charity Make-A-Wish and Ryder. Eve recently received a place at dance college, ahead of her GCSEs, and said her ' dream's always been to perform at Disney, and it's happening'. Molly's father Ian said: 'At first, we thought we only had months with her. We had to wait a week for further tests, and eventually they confirmed it was leukaemia. It's been a challenging journey over the last two and a half, three years, with quite intensified chemo every day.' Disney and Make-A-Wish have worked together for 45 years, bringing children more than 165,000 wishes around the world and some 20,000 at Disneyland Paris. Ryder represented the UK at the 2022 Eurovision Song Contest, coming second with the single Space Man. He was nominated for an outstanding original music and lyrics Emmy in 2023 for co-writing Fought & Lost, featuring Queen guitarist Sir Brian May, for the hit Apple TV+ series Ted Lasso.
The Herald Scotland
27-04-2025
- Entertainment
- The Herald Scotland
‘Heartwarming' Sam Ryder sings with critically ill children at Disneyland Paris
Jax Morris, who was diagnosed at the age of two with a rare genetic blood disease and lives in North Ayrshire, Scotland and Kent-based Molly Townsend-Blazier, who was diagnosed with lymphoblastic leukaemia, were among those performing. Sam Ryder at the launch of the Disney Music Festival at Disneyland Paris (Daniel Kennedy/Disneyland Paris/PA) The two nine-year-olds were joined by Habiba Konate Naim, 13, from Greater London, who is living with genetic condition Williams Syndrome and has had a life-saving kidney transplant, and Eve Wilson, 16, from the south coast of England, who is undergoing treatment for a brain tumour. 'Singing with these amazing kids was honestly one of the most meaningful and heartwarming things I've ever done,' Ryder said. 'They met as strangers, and it was a joy to watch them become friends as we bonded over the power of music and singing. The whole experience was so pure, and it's been a real honour that I will cherish forever.' Molly Townsend-Blazier, nine, participated (Daniel Kennedy/Disneyland Paris/PA) The Make-A-Wish UK supporter said the charity is 'the best of humanity.' He added: 'It transcends everything – politics, beliefs, all of it. It's only good. It brings out the best in everyone, and I just feel so lucky to be around that energy.' Ryder said that 'getting to meet and hang out a few weeks' while rehearsing with the children helped break 'the ice so we could just sing, dance, and enjoy the moment together'. He said: 'The main thing was making sure it felt like their day, building those bonds between them. 'If music was just the backdrop for all of that, then I'm humbled and honoured to have been part of it. They're amazing people — pure beauty, honestly.' The performance in front of the Sleeping Beauty Castle at the launch of the Disney Music Festival came ahead of World Wish Day – which takes place on Tuesday – and was a collaboration between Disneyland Paris, charity Make-A-Wish and Ryder. Sam Ryder at AIR Studios in Hampstead, London, during rehearsals (Daniel Kennedy/Disneyland Paris/PA) Eve recently received a place at dance college, ahead of her GCSEs, and said her 'dream's always been to perform at Disney, and it's happening'. Molly's father Ian said: 'At first, we thought we only had months with her. 'We had to wait a week for further tests, and eventually they confirmed it was leukaemia. It's been a challenging journey over the last two and a half, three years, with quite intensified chemo every day.' When Jax was four, he underwent chemotherapy and a bone marrow transplant and then had complications, viruses and autoimmune encephalitis, which the NHS says is a serious condition leading to swelling of the brain. This caused brain trauma and mobility impairments, but he is determined to try to walk again, and is still in and out of hospital, according to the charity. Disney and Make-A-Wish have worked together for 45 years, bringing children more than 165,000 wishes around the world and some 20,000 at Disneyland Paris. Ryder represented the UK at the 2022 Eurovision Song Contest, coming second with the single Space Man. He was nominated for an outstanding original music and lyrics Emmy in 2023 for co-writing Fought & Lost, featuring Queen guitarist Sir Brian May, for the hit Apple TV+ series Ted Lasso.
