Category Archives: Families

A New Diagnosis of Prader-Willi Syndrome

Produced by PWSAI and IPWSO

Educational film featuring Dr. Suzanne Cassidy and people who have Prader-Willi syndrome and their families.

Growth Hormone Therapy in Prader-Willi Syndrome

Produced by PWSAI and IPWSO

Educational film featuring Dr Charlotte Höybye and people who have Prader-Willi syndrome and their families.

Behaviour and Mental Health in Prader-Willi Syndrome

Produced by PWSAI and IPWSO

Educational film featuring Professor Tony Holland and families of people who have Prader-Willi syndrome.

“Oisín’s Story”

Here is a link to RTÉ Radio’s Documentary on One on Prader-Willi Syndrome: “Oisín’s Story”:

http://www.rte.ie/radio1/doconone/radio-documentary-oisins-story-prader-willi.html

From the RTÉ website:

Oisín O’Neill is the best in his family at feeding the chickens, dancing with abandon and keeping everyone to their routines. He’s a slender boy of eight, with the whitest of white blond hair. Oisín also has Prader Willi Syndrome. And this is his story.

Oisín is a tryer. It’s really hard for him to ride a bike, run for very long, do his school work, or even speak very well. But you should see him trying. He’s the oldest of five children, and proud of it. He likes hurling, rugby, farming, Ben 10 and Batman. And he’s brilliant at jigsaws. This documentary tells the moving story of his birth, his life, and the people who love him.

Prader Willi Syndrome is a rare genetic disorder with a collection of intellectual, emotional and practical difficulties. For Oisín’s family, behavioural issues are the biggest challenge. He has a preference for predictability and order, and anything that disrupts his expectations, or upsets him can lead to tantrums. But the most well-known symptom of Prader Willi is to do with food. Oisín has a deletion on Chromosome 15, which means that the part of his brain that tells him that he’s full after eating doesn’t work, and so he feels constantly hungry. As well as this, Oisín’s body needs less calories than a regular child, and so his diet and access to food are strictly limited. This documentary traces the challenges ordinary and extraordinary that come with having a child with Prader Willi Syndrome.

Oisín O’Neill lives in Monagoul near Ballymacoda in East Cork in the red farmhouse where his Nanny Kitty was born.

For more information about Prader Willi Syndrome, or for details of how to offer support, please email: praderwilliireland@gmail.com

Narrated and produced by Jools Gilson.

Production Supervision by Liam O’Brien

First broadcast Saturday 29th October @ 6pm. [2011]

An Irish radio documentary from RTÉ Radio 1, Ireland – Documentary on One – the home of Irish radio documentaries.

“The Morning Show” (TV3)

http://www.tv3.ie/videos.php?show_cal=2&newspanel&showspanel&locID=1.65.370&date_mode=1&date=2011-11-14

From the TV3 Website:

Mon 14 Nov 2011
We hear from two families who have been affected with the condition Prader Willi Syndrome

This extract features the O’Neill family:

“Would You Believe: Dara” (RTE)

http://www.rte.ie/tv/wouldyoubelieve/dara.html

From the RTE website:

Dara Meyler is an engaging, determined 13-year-old who lives with his family in the Dublin suburbs. Most people wouldn’t spot anything unusual upon first meeting him, but he is unusual in that he never eats sweets or chocolate – his treat has always been a diet yoghurt. In fact, Dara suffers from a condition called Prader-Willi Syndrome (PWS), a rare and complex genetic disorder that typically causes poor muscle tone, learning disabilities and problem behaviour. PWS is also most recognised by a chronic feeling of hunger that in many cases leads to excessive eating and, ultimately, life-threatening obesity. Such serious obesity problems have made newspaper headlines ever since PWS was identified in the 1950s.

But Dara is not obese and his behaviour has been exemplary, legacy of his own personal motivation and of a very informed, dedicated network of his family, friends, neighbours – and his school’s staff. His local mainstream school, Sacred Heart School, Sruleen, in Clondalkin, agreed to take him on 6 years ago and he has blossomed there with the assistance of the school Special Needs Teacher, Martine, and a dedicated Special Needs Assistant, Joanne.

As he nears the end of primary school, his life is about to change and those around him fear that the happy, fulfilled existence he has had over the past 13 years may give way to a very different regime. The teenage years are often a watershed for children with PWS, as weight and behavioural problems take over, friends move off and the children become less manageable for their families. To add to the family’s worries, it’s looking bad on the schools front for next September and they’re not optimistic they can find a suitable place for him in Dublin at all. It’s not hard to see how all this places a strain on any couple. The ‘we don’t get out much’ cliché certainly applies to the Meylers!

‘Would You Believe’ drops in on the family as Dara’s mother Maria and his father Ken consider moving him away from the fast pace of Dublin to Maria’s old family home in rural Wexford. She’ll move with him, Ken will stay in Dublin Monday-Friday, as work dictates. It’s just another in a long list of compromises the family have had to make ever since Dara was born. Added to this, they’re very concerned about Dara’s long-term future. He’ll never be able to lead a truly independent existence, so his parents, sister Clair and brother Ross will always worry about that.

There are about 100 people diagnosed with Prader-Willi Syndrome in Ireland, but the real figure may be higher. Currently, long-term residential care is provided in the form of a single, dedicated home which houses 6 adults with PWS. There, the dietary and behavioural needs of the residents are well met – but 6 places nationally is clearly not enough. The Prader-Willi Syndrome Association Ireland are desperately hoping for another such house – it represents the kind of long-term care the Meylers and many other PWS families could envisage for their children.

“One in a Million” (TV3)

We investigate the courage and heart-ache behind families of children with rare genetic disorders.

Broadcast: Wednesday, December 21, 2011 at 21:00
Duration: 00:48:21
Website:

http://www.tv3.ie/3player/show/276/43691/1/Specials

What is Prader-Willi?

This short video provides an overview of Prader-Willi Syndrome (Courtesy One SMALL Step, Canada).