After every PWS-related TV talk show comes on, it takes me some time to detox from the viewing. I have to remind myself that those stories do exist, but that's not our reality with Erin. Moreover, in FPWR, we're all working as hard as we can to make sure that it's not anybody else's reality for much longer. Stories like that break your heart, and they are meant to. Though the networks have a lot to gain from extreme anything, good can come from that kind of exposure, but it can sure be hard on parents to see it done like that.

It takes a lot of thought and even more work, but a system of support that is appropriate for each child can be put together that addresses the variety of PWS symptoms that each child faces. Until we can destroy it, we will dilute its affect by taking it apart, piece by piece, and setting up appropriate and effective interventions. Enjoy your child and, like all of us, keep looking for funding for these projects that can change what it means to have PWS!


Your email address will not be published.