A message from Tanya, whose daughter Lulu was born in 2017
“Lulu was diagnosed with PWS two weeks after she was born. Our first thought was PW What? When the doctor came into the room to tell us they had a diagnoses it’s the first time we had heard the words Prader Willi Syndrome. While our questions poured out one after the other we were met with “we don’t know” or “we’ll have to wait and see” or “time will tell”. There were no 100% definitive answers. We were told not to google anything as most of the information online was so outdated and given information about PWSAI from the hospital so that was our first step in reaching out.
I emailed PWSAI and got the most fantastic reassuring reply. We weren’t alone anymore! I’ll always remember reading the words “The future is bright” and for me, that’s exactly what I needed to hear at that time.
Lulu has 2 older siblings who were also struggling to understand her diagnoses. PWSAI reached out to other families around Ireland and we received so many lovely letters from other siblings of people with PWS. That was a great day! Now the kids also had reassurance that the future was bright.
Lulu’s first year was a whirlwind of appointments, information, therapies, researching, learning, travelling back and forth to hospitals and worry. If I had one wish now it would be to go back in time, worry less and enjoy more of that first year… hindsight at it’s best!
The PWSAI family weekend is a yearly event. We went the week before Lulu turned one. It was such a great fun filled weekend for everyone. Meeting the other families in Ireland was really lovely and reassuring and again, an eye opener that the future is bright!
Lulu has accomplished so much. She’s determined, loving, funny, kind. Lulu is not PWS. Lulu just happens to have PWS”
A message from Emma, whose son Henry was born in 2012
“My son Henry was diagnosed with PWS at just two weeks old. I still remember feeling lost as we were handed one page with a link to a medical site that described PWS. We were advised to stay away from google but we weren’t given any other information, so we googled and cried.
I wish I could go back now and tell myself that the future is bright and that the good days would far out weigh any bad ones. Henry really doesn’t let PWS hold him back.
PWS is rare but here in Ireland, we have a wonderful community, that are happy to support other families. You may want to reach out now or in a few months, whenever you are ready, make that call or email. You won’t regret it.
When Henry was a year old, we met with other families for the first time. We got so much hope from that meeting and realised that the bleak future we imagined was very far from reality.
If there’s any unanswered questions or you’d just like to talk, don’t hesitate to get in touch.”