Choosing Joy: How One Family Turned Pain Into Purpose After a Rare Diagnosis

BOCA RATON, FL- In a quiet moment each morning, Danielle Docobo pauses. She breathes in deeply, thankful for that single breath, and reminds herself of the gift of a new day. 

“Those first few seconds of the day are essential,” she says. “You can visit the darkness but not live with it.”

Danielle and her husband, Bryan, never imagined they would be navigating the reality of a rare disease. Their two sons, Liam and Ethan, were both diagnosed with Coats Plus Syndrome—a genetic condition so rare that it often goes undetected until it is dangerously advanced. Liam’s diagnosis came first after a seizure at age four led to scans that revealed calcifications in his brain. It was not long before they learned Ethan had the same disease.

Ethan passed away when he was just four years old.

For most people, that kind of loss would be paralyzing. Furthermore, at first, it was. The grief came in waves, sometimes crashing, sometimes silent. Danielle, a pediatric nurse, leaned into her spirituality and intuition, while Bryan focused on learning, researching, and doing what he physically could to help their boys. Their paths to healing were different, but they slowly found meaning alongside each other.

“This has been a transformation of the soul,” Bryan says. “You can not avoid the pain. However, you can choose what you do with it.”

Alongside other families facing the same diagnosis, they established the Coats Plus Foundation, a nonprofit organization dedicated to changing the narrative surrounding this little-known disease. The foundation has four key pillars: fundraising, awareness, support for other families, and advocacy. It is a way to give back and press forward—for Liam, Ethan, and every family still searching for answers.

Starting the foundation was not easy. It meant sharing intimate parts of their personal story. However, over time, it has become something deeply healing, not just for them but for the growing community around them.

“Going through this process, we have found a great community that has made it easier to turn this immense pain into purpose,” Danielle explained.  

Even with everything they have endured, Bryan and Danielle radiate something some might not expect: gratitude. They speak about Ethan with tenderness and presence, describing how they still feel his spirit in quiet moments. They discuss Liam with fierce love and hope, honoring his strength and resilience. Moreover, they speak about the future—not with fear, but with peace.

“My advice is always to seek to understand,” Bryan says. “When you lead with understanding, the anger fades. Moreover, that is when healing begins.”

In addition to the foundation, Docobos recently launched a storytelling project to give voice to families affected by rare diseases, such as Coats Plus. The show shares real stories, hard truths, and small victories—always grounded in believing that light is still possible even in the darkest circumstances.

Their work is not about having all the answers. It is simply about repeatedly showing up with honesty, courage and love.

Because in that breath each morning, there is pain, purpose, hope and peace. 

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On June 13, the Docobos and the Coats Plus Foundation will host a charity golf tournament at the Country Club of Coral Springs. The event marks a time for community members to come together in support, raise awareness, and continue to reflect on and learn about the impact of the disease at the heart of their mission. Join us for a meaningful day of golf, connection, community support, awareness and learning about Coats Plus.

To learn more about Coats Plus and how you can support ongoing research and awareness, visit www.coatsplusfoundation.org