Family of Wicklow girl (8) with rare genetic condition overwhelmed by support
Stella is the daughter of Anna and Conor Leonard of Moneystown and shortly after her birth she was diagnosed with Prader-Willi Syndrome (PWS), which is a genetic condition caused by missing or faulty genes on chromosome 15 and is characterised by a range of physical, cognitive, and behavioural symptoms.
'Team Stella' organised a fundraising coffee morning and raffle, which took place on Sunday in Moneystown Community Hall, which ended up raising over €7,500 for the Prader-Willi Syndrome Association of Ireland.
Stella's mother Anna said: 'Words cannot express how much everyone's kindness and support mean to us. From the bottom of our hearts, thank you to everyone who donated, helped, and joined us on the day.
'Stella hasn't stopped talking about it, and we're so grateful for everything. It went beyond what we could have imagined. What started as a small community gathering turned into an amazing display of support, love, and generosity.'
The morning was filled with fruit, cakes and bakes, while the talented Esther from 'The Risky Chicks' also put on a special performance. All the kids in attendance had a blast with the play corner—painting stones, tattoos and playing games, while the sweet and popcorn shop proved a massive hit.
Anna stated: 'Possibly the most cherished part of the morning was Stella's calm corner, where people could take a moment to relax. Stella truly made the most of this space.'
She added: 'What made this day even more special was the incredible turnout. We never expected such a large gathering, and it was heartening to see so many people coming together. The community spirit was truly infectious. We were especially moved by the support from Stella's friends with PWS, who travelled from Kildare, Greystones, and Wicklow just to be with us.'
'Team Stella' also offers a huge thanks to everyone who ensured the event ran smoothly, whether it was selling raffle tickets, assisting with the clean up, or lending a hand wherever needed.
'We'd also like to express our heartfelt thanks to the Timmons and Leonard families for their incredible support, and to principal Ms Morris and deputy principal Ms Durston, of Moneystown National School, for looking after everyone with teas and coffees, and a special thank you to Bruno, our teddy mascot, for keeping everyone entertained and spreading even more fun throughout the day,' said Anna.
Local businesses also generously donated some great raffle prizes, which ensured that everyone left the coffee morning with a smile on their face.
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Irish Independent
3 days ago
- Irish Independent
Family of Wicklow girl (8) with rare genetic condition overwhelmed by support
Stella is the daughter of Anna and Conor Leonard of Moneystown and shortly after her birth she was diagnosed with Prader-Willi Syndrome (PWS), which is a genetic condition caused by missing or faulty genes on chromosome 15 and is characterised by a range of physical, cognitive, and behavioural symptoms. 'Team Stella' organised a fundraising coffee morning and raffle, which took place on Sunday in Moneystown Community Hall, which ended up raising over €7,500 for the Prader-Willi Syndrome Association of Ireland. Stella's mother Anna said: 'Words cannot express how much everyone's kindness and support mean to us. From the bottom of our hearts, thank you to everyone who donated, helped, and joined us on the day. 'Stella hasn't stopped talking about it, and we're so grateful for everything. It went beyond what we could have imagined. What started as a small community gathering turned into an amazing display of support, love, and generosity.' The morning was filled with fruit, cakes and bakes, while the talented Esther from 'The Risky Chicks' also put on a special performance. All the kids in attendance had a blast with the play corner—painting stones, tattoos and playing games, while the sweet and popcorn shop proved a massive hit. Anna stated: 'Possibly the most cherished part of the morning was Stella's calm corner, where people could take a moment to relax. Stella truly made the most of this space.' She added: 'What made this day even more special was the incredible turnout. We never expected such a large gathering, and it was heartening to see so many people coming together. The community spirit was truly infectious. We were especially moved by the support from Stella's friends with PWS, who travelled from Kildare, Greystones, and Wicklow just to be with us.' 'Team Stella' also offers a huge thanks to everyone who ensured the event ran smoothly, whether it was selling raffle tickets, assisting with the clean up, or lending a hand wherever needed. 'We'd also like to express our heartfelt thanks to the Timmons and Leonard families for their incredible support, and to principal Ms Morris and deputy principal Ms Durston, of Moneystown National School, for looking after everyone with teas and coffees, and a special thank you to Bruno, our teddy mascot, for keeping everyone entertained and spreading even more fun throughout the day,' said Anna. Local businesses also generously donated some great raffle prizes, which ensured that everyone left the coffee morning with a smile on their face.
The Irish Sun
7 days ago
- The Irish Sun
UK landmarks glow orange to raise awareness of rare genetic condition
Some of the UK's most iconic landmarks were glowing orange last night - to raise awareness of a rare complex genetic condition that affects approximately 2,000 people in the UK. London's Tower 42, Cardiff Castle, The Mersey Gateway Bridge and Green's Windmill in Nottingham were among the buildings to 'Glow Orange' to highlight Advertisement 4 A number of buildings across the UK were lit up orange last night to raise awarness for those affected by Prader-Willi Syndrome (PWS), including Cardiff Castle pictured here Credit: Matthew Horwood/PinPep 4 The Mersey Gateway Bridge was also visibly orange last night to mark the end of PWS awareness month Credit: Phil Oldham/PinPep 4 Green's Windmill in Nottingham lit up in orange last night Credit: James Linsell-Clark/PinPep Southend Civic Centre, The glow up lasted from sundown until sunrise, across 17 different landmarks, to mark the end of Prader-Willi Awareness month in May. Nigel Birrell, CEO of which was behind the activation and a proud charity partner with a "It's been truly inspiring to witness so many landmarks across the country light up in support of PWS awareness - the level of engagement has really touched us.' Advertisement Read More on UK News PWSA UK and FPWR UK (Foundation for Prader-Willi Research UK) have come together for a second year to plan and organise several events, which included one at the House of Lords on May 14th. Hosted in the capital city, it included speeches from both charities and the PWS community who shared their experience of living with the condition. The event also provided information to help people understand the complexities of PWS – the hope being that a better understanding will lead to more effective support which will save money and lives. The aim of the various events was to generate awareness and understanding of this rare condition which causes an overwhelming and uncontrollable drive to eat that can be life-limiting, as well as learning and physical difficulties. Advertisement Most read in The Sun Breaking Exclusive Breaking Together the charities are using the condition's initials to help people recognise key issues associated with the disorder. P - Persistent hunger which can lead to life-threatening obesity. The full list of lit-up buildings Tower 42 Bradford City Hall Bridport Town Hall Clock St Edmundsbury Cathedral Gateshead Millennium Bridge The Mersey Gateway Bridge Green's Windmill Southend Civic Centre Camera Obscura and World of Illusions The Guild Hall Worcester Cardiff Castle Moorish Castle (Gibraltar) Ranfurly House Dungannon Burnavon Cookstown Bridewell Magherafelt Portsmouth Spinnaker Tower Titan Crane, Scotland W - Warning signs absent, typical health warning signs are absent for people with PWS. S – Specialist Care - people with the condition need specialist care, with round-the-clock supervision. Advertisement Jackie Lodge of PWSA UK and Catherine Shaw of FPWR UK issued a joint statement. They said: 'We're delighted that PWSA UK and FPWR UK have come together again for PWS month to raise awareness for such an important cause. 'We want to generate as much awareness about PWS as possible and by these buildings and landmarks lighting up orange it is a fantastic way to do so, on top of the other events that have taken place this month. 'We're really grateful to these buildings for shining a light on this important cause.' 4 Tower 42 (left) stood out orange on the London skyline last night Credit: Simon Jacobs/PinPep Advertisement
The Irish Sun
30-05-2025
- The Irish Sun
The £2.25 cleaning cupboard staple that could be RUINING your pipes and land you with a £400 bill
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