From Loss to Advocacy: Bryan and Danielle’s Journey

In this heartfelt conversation, Rachel speaks with Bryan and Danielle Docobo, a couple who have turned their personal tragedy into a mission of advocacy for rare disease families. Their boys, Liam and Ethan were both diagnosed with a rare genetic condition known as Coats Plus Syndrome by a team at Joe DiMaggio Children's Hospital. They share their journey of navigating grief after the loss of their son Ethan, while also fighting for the health of their other son, Liam.  The couple discusses the importance of community support, spirituality, and finding meaning in their loss as they work to raise awareness and funds for research. Their story is one of resilience, love, and the power of turning grief into action.

To learn more about Coats Plus Syndrome and ways you can donate, you can reach out to Bryan@coatsplusfoundation.com 

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The podcast content is intended for informational and educational purposes only and should not be considered a substitute for professional medical or mental health advice.