When it comes to parenting children with rare disease, there’s often a lot of focus on the moms and their experiences around birth, the diagnostic process, and the work of giving care. One group we hear a lot less from? The dads.
So in today’s episode, we’re digging in to the Dad side of things. Joined by Derek, whose daughter has intractable epilepsy, Juston whose son has CDPX1, and Zach who daughter also has a rare genetic disorder, these dads share what it was like rebuilding their family structure with rare disease factored in. They share their feelings around responsibility, helplessness, and the ways that they and their partners each coped differently in the wake of their children’s diagnoses.
These dads are so vulnerable and honest with us, and this episode is an absolute must-listen for anyone with a rare disease dad in their life!
 
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