In this episode, I speak with Kristen Worrell. Kristen is the amazing mom of two young children, one of which has Skraban-Deardorff Syndrome. Kristen talks to us about what the diagnosis means for Lynnie, who truly is a little superhero. We talk a lot about the struggle we have with the unknown of the SKDEAS diagnosis due to the large spectrum of impact to our kids. We discussed all of the therapies that our children endure each week and how we are constantly questioning if we are doing too much or not enough. I think a lot of parents will relate to our conversation.
Please visit SKDEAS.org for more information about Skraban-Deardorff and how you can support our superheroes.