'A chance for independence' - World's first respite centre for Prader-Willi Syndrome opens in Ireland

The world's first respite centre for those who suffer from Prader-Willi syndrome has opened in Laois at the weekend.

The centre, named Áit Shona, will provide families affected by the debilitating condition with an opportunity for some much needed respite but will also give those who suffer from the syndrome a chance for some supervised independence.

Around 120 people in Ireland have been diagnosed with the disease that can see them suffer from anxiety, depression and and uncontrollable urge to eat.

Speaking on Newstalk earlier this week, chairman of the Prader-Willi Syndrome Association of Ireland (PWS), Rory Tierney, spoke candidly about his own struggles with the syndrome.

At just a couple of weeks old, Rory's son Henry was diagnosed with the rare genetic condition following concerns from doctors that he had very low muscle mass and felt "limp".

"It's a whole of life condition with no cure that needs constant management", said Rory.

Following a very hard year or two of getting to grips with Henry's diagnoses, Rory and his family got involved with PWS.

"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."

Rory spoke about how this condition affects not just Henry, now 12, but the whole family. 

"Life revolves around food management and keeping his anxiety levels low", said Rory, "When he grows older, he'll never be able to manage."

Because of these uncontrollable impulses, Henry is "always in a constant state of anxiety", with his energy levels, emotions and behaviours being hard to manage.

Henry has a younger brother Billy, 4, who Rory says can find it confusing and hard at times as he doesn't understand his older brothers condition. 

Trips outside have to be carefully managed as Henry can experience outbursts of crying or shouting which can be stressful for the family.

Their kitchen door at home also has to be locked with food restricted to keep Henry's food anxiety under control.

"It's important to point out", Rory adds, "These behaviours are not Henry, it's the syndrome controlling him."

Henry and his dad Rory at the opening of the new respite centre in Laois at the weekend 

The new centre opened in Laois will give sufferers like Henry and his family, some much needed time respite, which Rory and his family have been looking for "for many years".

"It will give primary care givers a rest, breaks, a recharge from restrictions of the syndrome.

"It's important to remember - this isn't people trying to get away from their children...it can be so debilitating for families.

"Just to give a sibling some normality but also for Henry a chance for a holiday, supervised independence and a pathway to residential services."

Also speaking on the show was Lynsey Moorhouse, Regional Operations Manager with Resilience Healthcare which manages the new centre in Laois,

"We are really excited", said Lynsey.

"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.

"We worked with the association, the HSE and the Government members to make this house a reality.

"The excitement on Saturday here in Laois was just palpable, it was amazing."

Ms Moorehouse the centre will be a place for people who suffer from Prader-Willi syndrome to be able to spend time with their peers and friends but also professionals who understand their condition and support their needs.

"It allows them to have fun and not worry or feel anxious about whether the people around them understand their challenges."

“It allows them to have fun and not worry or feel anxious about whether the people around them understand their challenges.”

You can listen to the full interview here