In this moving episode of Grief and Light, host Nina Rodriguez sits down with Bryan and Danielle Docobo to explore their journey through profound loss, love, and advocacy following the death of their son Ethan, who passed away from the rare genetic disorder Coats Plus Syndrome. As parents navigating complex grief while raising their surviving son Liam, who lives with the same diagnosis, Bryan and Danielle speak candidly about the emotional, spiritual, and logistical realities of their path, as they work against time to save him.

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How you can help:

• Contact: [email protected]
• Visit: coatsplusfoundation.com
• Donate to the Coats Plus Foundation
• (June 13th) Father's Day Tournament

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Danielle, a dedicated pediatric nurse, and Bryan, a real estate attorney and podcast host, share how they turned heartbreak into hope through the creation of the Coats Plus Foundation. Their mission includes fundraising, research, awareness, and building a supportive community for families navigating rare diseases.

This heartfelt conversation covers the duality of grief and joy, the spiritual lessons they’ve learned, the importance of vulnerability, and how taking action has become a healing force in their lives. Whether you’re a grieving parent, a rare disease advocate, or simply someone walking through loss, their story reminds us that love never ends, and neither does the impact of a life, no matter how short.

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Click here to watch on YouTube

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Takeaways:

• Grief is lifelong and evolves with time. It is not something to “get over,” but something we live with.
• Naming the problem (such as a diagnosis) allows families to shift into problem-solving and advocacy.
• Community is everything. Whether through foundations, peer support, or safe spaces for grief.
• Rare disease diagnoses are devastating, but can serve as a catalyst for collective action.
• Guilt is common when balancing the needs of multiple children in medical crises.
• Hope lives in action—advocacy, fundraising, and awareness-building create purpose from pain.
• Spirituality and brotherhood provide grounding during uncertain times.
• Men also need safe spaces to express grief and vulnerability.
• Special needs children contribute immense value and joy to their families.
• Presence is everything. Ethan’s life taught them to cherish every moment.
• Taking action, through storytelling, fundraising, or showing up can be a form of healing.
• You can be in grief and in joy; it’s not either/or—it’s both/and.

Connect with Nina Rodriguez:

• @griefandlight
• griefandlight.com
• 1:1 Grief Support

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Disclaimer: griefandlight.com/safetyanddisclaimers