Consensus Gretton, providers of support and accommodation for adults with Prader-Willi Syndrome (PWS) launched our #PWSandme Campaign, which looks beyond PWS as a ‘condition’ to the people whose lives have been touched by it, with the aim of creating better understanding and awareness of this rare genetic disorder.
Watch and listen below as mothers and fathers share their personal journey’s of raising a child with PWS. These are their stories and their experiences, in their own words.
To visit our campaign page and hear the personal journey’s of people living with PWS and their support workers, as well as access more information and advice on PWS, visit our campaign page: www.consensussupport.com/pwsandme
#PWSandme Case Studies
Jacky, David and Nick’s story
When Nick was diagnosed with Prader-Willi Syndrome at eight months old, the doctors told his parent’s, “don’t go and look up all the information because it doesn’t all apply to your son. But of course, what do you do?” said Jacky. “David went to the library and printed out the sheet on PWS and of course you read all the bad things…”
Mandy and daughter Katie’s story
When Katie was tested for PWS at 12 weeks old, the results came back negative and the family got on with their lives. Then,age two and a half, they got the news that left them devastated. Katie’s mum Mandy said, “At the time we didn’t know anything…they really couldn’t give us any guarantees as to her future.”