Louise's Story

I connected with the PWSA at the beginning of the year when I organised a charity football tournament to raise money and awareness for Prader-Willi Syndrome (PWS). At the time, I wasn’t fully aware of just how much the association does to support families like mine.

Before that, I had never met anyone else with PWS other than my daughter. Meeting Millie was like a breath of fresh air, she and my daughter instantly connected, and it was so beautiful to see her bond with someone who truly understands her. For me, it was equally comforting to meet another parent who could relate to our day-to-day challenges. Until then, I’d never really felt understood or supported because, so few people truly grasp what life with a child with PWS is like.

Patsy has been an absolute legend. Not only did she provide emotional support, but she also advised me that my daughter should be entitled to a higher rate of DLA. She spent hours with me, patiently going through the forms and helping me phrase things properly, using the right terminology to reflect my daughter’s needs. I can’t express how grateful I am for the time, care, and understanding she showed. I only wish I had reached out to PWSA when my daughter was first diagnosed ,it would have made such a difference to our journey. Even now, I often feel that medical professionals don’t truly understand PWS, but with the PWSA, I finally feel heard and supported.

We’re still waiting for the DWP decision, which is currently taking around 25–30 weeks, but I already feel empowered and far more confident knowing that I’ve had the right help and advocacy behind me.