When No News is TRULY Good News with Ryan Barbera - Episode #138
One of the invisible burdens many parents of children with degenerative or recurring disease carry is the knowledge that someday the other shoe may drop. They don’t know when or at which doctor’s appointment, but that knowledge, that things could take a turn for the worse, bears weight on their souls.
Our story teller on this episode, is a father, Ryan Barbera, whose son was diagnosed with the rare degenerative disease, Becker’s Muscular Dystrophy. He shares today with host Jessica Patay, about the challenges he faces as a parent: misdiagnosis, searching for a cure, always being the person at the party talking about their sick kid and the stress of waiting for results. They also discuss the importance of taking care of your mental health in this high stress parenting scenario and why modeling all the emotions with your kids is important. It’s a very deep, open and inspiring conversation.
Ryan Barbera is the Co-Founder of Strongest Hearts a non-profit that is designed to exclusively work to find a cure or treatment, educate and advocate for DMD and BMD. DMD is the number one killer for adolescents in the US and we search to find a solution that will help over 90% of the DMD and BMD community.
Connect with Ryan Barbera and Strongest Hearts here.
Brave Together is the podcast for We are Brave Together, a not-for-profit organization based in the USA. The heart of We Are Brave Together is to strengthen, encourage, inspire and validate all moms of children with disabilities and other needs in their unique journeys.
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