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Catherine’s Story

Catherine with Eleanor

I’m Catherine Shaw, Co-founder and Chair person of FPWR UK. I just thought I would introduce myself and share my story.

I am a Mum of 3, my eldest daughter Eleanor was diagnosed with Prader-Willi Syndrome at just under 3 weeks old. I am a bit of a fixer, I like to find solutions to things. I had never even heard of PWS, never mind have a solution. I felt lost and helpless. Between the tube feeds, physio, and numerous appointments, I spent my time researching PWS and how on earth I was going to make my baby better, and give this tiny being some hope.

My research showed me that actually there was no magic drug out there, there was nothing I could do to make it all go away. This answer was not good enough for me. If there was nothing to fix it, then we must find something to fix it! I knew there needed to be more scientific research into drugs, and therapies to address the many PWS symptoms.

FPWR in America was like a shining star in the dark night sky, they were the only organisation dedicated to funding worldwide research and changing the future of PWS. I entered into talks with them, learnt more about the organisation, and decided to host the first UK One Small Step Walk. It soon became apparent that a British leg of the charity would be the way forward. So, in 2010, when my daughter had just turned 1, FPWR UK was born.

FPWR UK has gone from strength to strength. From a standing start, and not a penny in the bank, we have managed to fund over £380,000 of research. Covid hitting has been a massive set back with our fundraised income down by over 75%. But we can come back stronger than ever, with your help.

For me, I just need to look at Eleanor. She has PWS. I can’t take that away, and I wouldn’t want to, it is in her smile, and her eyes, it is in her personality, it gives her the incredible strength she displays daily, the determination and stubbornness, and her loving and generous nature. But it also makes every day difficult, every single day I see her work harder, for longer, I see the emotion building up that she doesn’t understand and she can’t control, the fatigue that takes over her whole being, the sores from the skin picking, I could go on and on. For that reason, I will continue to look at my beautiful little girl, take my strength from her and fight PWS in the only way I can, by fundraising, by funding research, by finding treatments, by finding a cure.

So, to introduce myself again. Hi, I’m Catherine, I am just a Mum, passionate about beating PWS for my child and yours. Will you help me?