ONCE UPON A GENE – EPISODE 276: His Two Sons Were Diagnosed with Coats Plus Syndrome — One Father’s Story of Rare Disease Advocacy and Brotherhood with Bryan Docobo

Bryan Docobo — attorney, father, rare disease advocate, and
founder of the Coats Plus Foundation. Bryan opens up about the devastating journey of losing his four-year-old son Ethan to Coats Plus Syndrome (a rare telomere disorder caused by a CTC1 gene mutation) in June 2024, while fiercely fighting for his older son Liam, who is also battling the same condition. Bryan shares the pre-diagnosis struggles, the shocking moment of Liam’s grand mal seizure that led to the diagnosis, the science behind the disease (telomere
dysfunction affecting blood vessels, brain, eyes, and GI tract), and the
proactive steps his family has taken. These include pushing for Avastin
(anti-VEGF) treatment that has stopped brain calcifications and leukodystrophy progression in Liam, stem cell infusions showing clinical improvements, and an ambitious push for personalized gene therapy (requiring $3–5 million in
funding).He also discusses the profound grief that transformed into purpose, including losing 80 pounds, deepening his spirituality, and founding the
Luminary Tribe — a growing men’s support community in South Florida (with plans to expand) focused on vulnerability, connection, and helping high-achieving men
show up stronger for their families. This episode is a masterclass in resilience, advocacy, fatherhood, and turning unimaginable pain into meaningful action that could help not just Coats Plus families but the broader rare disease and longevity communities.

Links:

Coats Foundation

LUMENARY Instagram

Bryan's Instagram