A Coral Springs family we first told you about in 2023 is now dealing with an unimaginable loss.
Bryan Docobo told NBC6 their 4-year-old son Ethan has passed away from Coats plus syndrome. Their 7-year-old son, Liam, is still battling the extremely rare disease.
Last year, NBC6 sat down with the Docobo family after they launched the Coats Plus Foundation to raise awareness and funding for research.
Coats plus syndrome is a genetic disease that affects cognitive function, bone mass and the gastrointestinal tract. Eventually, it becomes difficult to walk and talk. Only a handful of children around the world have been diagnosed with the disease.
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In 2023, Bryan Docobo told us Ethan was given a life expectancy of another 2 to 4 years. He only made it one year until his passing on June 30, 2024.
“If anything happens to Liam, I just know that we’re not going to be okay,” Docobo said. “[But] that feeling is going to keep us pushing forward.”
The Docobos say their foundation has connected them with international families who are also battling the disease, which has only been understood by doctors since 2012.
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The need for more funding is growing.
“We have research teams that are ready to be funded. We have a path to try to get to a gene therapy,” Docobo said. “We’re never going to move on, but we must move forward. We have to move forward for those that we love and the other children out there.”
Docobo says Ethan’s organs are being donated to the University of Miami’s Brain Endowment Bank for research. He says Ethan is the first child with Coats plus syndrome to have his organs donated.
As of July 9, a GoFundMe page for the Docobo family has raised more than $120,000.
The Docobos are inviting the public to Ethan’s celebration of life Friday at noon at Temple KOL AMI Emanu-El at 8200 Peters Road in Plantation.
