Do you ever wonder about the future of our recently diagnosed kids? Or what it what like for the parents that came before us that didn't have the benefit of a diagnosis for most of their child's life? Me too! Lisa Patterson is the mom to a 17-year-old daughter with Skraban-Deardoff Syndrome and she talks about what it was like to raise her daughter pre-diagnosis and the life of her daughter now, as well as where she sees her daughter in the future. She tells us some great stories and gives great advice - including the importance of caring for ourselves so we can better advocate for our children.
Skraban-Deardoff Syndrome is a mouthful! The Skraban-Deardoff Syndrome Foundation has developed the acronym of "SKDEAS"...making it a bit easier the talk about the syndrome.
Thank you for listening and for supporting the passion project to drive awareness for SKDEAS.
Please visit SKDEAS.org for more information about Skraban-Deardorff and how you can support our superheroes.