By Catherine Shaw, Chair of FPWR UK
There are lots of ways to support people with Prader-Willi, so why did I choose research? Well the answer is simple, I wanted to offer my child a brighter future.
When my daughter Eleanor was born and diagnosed with PWS, I felt she had been dealt a rubbish hand, at no fault of her own. I watched her struggle to feed, to move, it took her over a year to show us a smile, everyday she had to work so much harder than any other baby/child to reach milestones. I saw the effort she put in, and figured, if she could, so could I, and decided to dedicate my life to making hers easier.
We need to do more
We can do so much to support these individuals, but ultimately we can’t take PWS away from them. They will continue with their daily struggles, whether it be physically, cognitively, mentally, emotionally or medically. The nature of these struggles may alter as they age, but they will always be there, unless we do something.
The ONLY way to change this path is to find medications, therapies, and treatments to address the PWS symptoms. The ONLY way to find these solutions is through research. So what I am really saying is the ONLY way to change our loved ones’ future and offer them hope is through research.
I am not a scientific person, and I don’t always understand the intricacies of the research projects. Some of the research papers are overwhelming or even a bit scary to read when you don’t understand the terminology, the language or the science. You cannot allow this to put you off. I do not understand all of the science but I 100% trust the process. I don’t need to understand it to believe this is the only way to make a change.
Change is possible
We need to make a change, and we cannot do this alone. We need to all come together. If we are always waiting for someone else to invest, to fundraise, to show support, to spread the word, then we could be waiting a very long time, and meanwhile our loved ones’ lives are passing them by with the daily struggles never easing.
How you can help
If you want to see a change, make PWS more manageable, and offer hope to all those living with PWS then please contact us. Whether it be telling all your friends about us, donating £2 a month to our cause or running a marathon, every little bit helps. Make a difference today