This Blog was written by Catherine Shaw, Chair of FPWR UK
When you get a Prader-Willi diagnosis, you can feel so alone, such a rare condition that few have heard of, you quite possibly have never heard of it, and you certainly don’t feel equipped to embark upon this life. However, you soon find there is a PWS family there ready to welcome you with the biggest, warmest, most loving open arms that you could wish for.
I refer to the PWS family as a family not a community, because that is exactly what they are. They laugh with you and cry with you. They celebrate the highs and understand the lows. They offer advice, they hold your hand through daunting medical and educational battles, they keep you company on the many hospital stays. They are your comfort, your rock, your lifeline, your normal.
Most of the time we have never met many of our extended family. They spread all over the world, and yet we have a connection that can’t be broken. Despite the distance, if we need our family, if we need some support, we can receive it within minutes due to the wonders of technology and social media, and it is always there. It is guaranteed that someone will hear your cry and answer your call for help.
Why am I writing this today? Well, my heart hurts. My social media has been flooded with posts about a gorgeous young girl who has lost her battle with PWS. When I say flooded, I mean literally every other post. My family is broken. Have I met this young lady? No. She doesn’t even live in this country, but she is my family, her parents are my family, and we are all feeling their loss.
This is just one of many premature deaths this year, and unfortunately, may well not be the last. PWS is a spectrum and people are affected in different ways, some are more prone to complications than others, some are in and out of hospital regularly and others rarely, some of these deaths are just out of the blue. This is the cruelty of PWS
Today more than ever, I need you to understand the importance of research. The ONLY way to protect my family is through the advancement of RESEARCH. Nothing will change if we stand still. Nothing will change if we don’t make a difference. Nothing will change if we feel our small efforts aren’t worthy. Nothing will change if we don’t support fundraising. Nothing will change if we can’t pay these researchers. Nothing will change if we don’t change it.
We need to fight for our PWS family, and we need your help. It doesn’t matter how small the action is, how small the donation is, even if it is just sharing posts and raising awareness. Our combined actions will initiate change.
We need research. We need hope. We need to change the future.