A Wicklow woman has opened up about the realities of Prader-Willi Syndrome, a genetic condition that leaves those with it with constant hunger pangs.
Jane Cox’s daughter Laura was diagnosed when she was just three months old.
Jane told RSVP Live: “Laura was a very small baby, she weighed only 4lbs 15oz when she was born.
“She was very weak and very flexible. The gynecologist thought I had the wrong dates and that she was premature, but I knew that was not the case.
“After a few days they started to realize that something was wrong with the baby, and when the tests came back, he was diagnosed with Prader-Willi syndrome.”
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Jane said the family were lucky to be able to have excellent healthcare services, which would not be the case these days or in other parts of Ireland.
“In Wicklow 24 years ago, the services were incredible. The nurse and physio knocked on my door when Laura was less than three weeks old and kept coming home.
“She was doing physio six times a day, which I think made a big difference in Laura hitting her milestones.”
Although many people with PWS are morbidly obese and have a low life expectancy, Laura has had a healthy weight throughout her adult life. However, she battled IBS and other stomach issues.
Laura, who is now 24, moved into a residential care facility two years ago, but before that she was living at home with her family. Jane says it was a struggle to control her daughter’s access to food before she moved out.
“She would have had a sick stomach often and it was quite a job to protect her from good food.
“I grew strawberries in my garden and I had to keep them safe because she would eat them even if they were completely green or had a huge slug hole in them.
“If someone threw food it would be very hard for their hand not to come down to pick it up and eat it, they can’t help it. And obviously, food like that would be dirty. Even things like cat food would be tempting to her.
Laura’s fixation on food has caused her a lot of anxiety, but now that she is on assisted living, her mental and physical health is much better.
“She does very well in an environment adapted to her needs.
“Her food arrives on time, she knows when she’s going to get it and how much. And when she gets up in the morning, we give her her daily menu so she knows exactly what she’s eating. It really helps his anxiety.
“Over time, she was able to deal with more things in her life. She has done literacy on a Thursday morning for the past year. And she goes to her horse riding even if for several years she had given up on it, even if she loved it because everything was a stress for her.
Jane is proud of her daughter and says she has handled the challenges of her condition very well.
“We were very lucky that most of the time she stuck with the supports we put in place around her and was cooperative about it. We always said that if she got food she shouldn’t get, we’d say, “We’re sorry, we didn’t support you properly.”
“People with PWS, if given the opportunity, tend to be very loving and resilient. It is soldiers who face such difficulties. And they just don’t get the credit for how wonderful they are.
For more details on the program or to register for the upcoming International Prader-Willi Syndrome Organization conference, co-hosted by the Prader-Willi Syndrome Association Ireland, taking place at the University of Limerick from 6-10 July, visit www.pwsai.ie/ipwso-conference
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