The world’s first Prader-Willi syndrome respite centre opened in Laois over the weekend.
The holiday house, named Ait Shona, will provide families affected by the condition with the opportunity to relax and have fun in an environment tailored to their needs.
Prader-Willi syndrome (PWS) is a rare genetic condition that affects a child's metabolism, body and behaviour.
It impacts around 120 people in Ireland.
Speaking on Lunchtime Live today, Rory Tierney, chair of the PWS Association of Ireland and father to a son born with the condition, explained what it entails.
“There is no cure; it’s only constant management – you don’t grow out of Prader-Willi syndrome,” he said.
“The main symptom is an uncontrollable urge to eat. You can imagine the feeling of always being hungry and always wanting to eat, what it would do to your emotions, your mood, your behaviours and your energy.”
Diagnosis
Mr Tierney said his son Henry was diagnosed two weeks after birth when doctors noticed he had “very low muscle mass.”
“It was pretty scary and very hard to hear that about your small baby,” he said.
“After some time, when we came to terms with it, we got involved with the Prader-Willi Syndrome Association of Ireland.
“They helped us with resources and information because there's so much on Google that isn’t accurate.”
“There’s a group of parents in Ireland who are very knowledgeable about Prader-Willi syndrome and that’s where we get our energy and support.”
New facility
Lynsey Moorehouse, Regional Operations Manager with Resilience Healthcare, which manages the new respite centre in Laois, said it’s a fantastic facility.
“It’s a holiday house where people can come for a much-needed break with their peers, while also giving families the respite they need,” she said.
“We worked with the association, the HSE and Government members to make this house a reality.
“The excitement on Saturday here in Laois was just palpable – it was amazing.”
'So excited'
Ms Moorehouse highlighted the importance of having experts on the condition available at the centre.
“People with Prader-Willi syndrome, both adults and children, are so excited to come here,” she said.
“They know they’ll spend time with their friends and work with a team who understand their condition and the support they need.
“It allows them to have fun and not worry or feel anxious about whether the people around them understand their challenges.”
Around five people are born with Prader-Willi syndrome in Ireland each year.
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Main image: Rory Tierney and son Henry at the launch of the Prader-Willi syndrome respite centre in Laois on Saturday. Image: Facebook/ Prader Willi Syndrome Association Ireland (PWSAI)
