Bryan Docobo, his wife Danielle, sons Liam and Ethan. {courtesy}
After an unimaginable loss, a Coral Springs family is inviting the community to join a 5K — both in-person and virtual — on Saturday, August 23, to help save their son from a rare genetic disease.
Back in May, Coral Springs Talk shared the heartbreaking story of Brian and Danielle Docobo, who last summer lost their 4-year-old son, Ethan, to Coats Plus Syndrome. This rare and fatal genetic disorder slowly strips children of their ability to walk, talk, and, ultimately, survive.
Amid that heartbreak comes a new fight to save their surviving son, 8-year-old Liam, who also has the same condition.
“Since Coral Springs Talk last covered our story, there’s been an exciting development; we’ve connected with a leading gene scientist who is moving forward to develop a gene editing approach for Coats Plus Syndrome,” said Brian Docobo.
That scientist is Dr. Mustafa Tekin at the University of Miami, who has begun developing a gene-editing therapy for Coats Plus Syndrome. The therapy requires two breakthroughs: the treatment itself, which corrects the mutation, and a delivery system, or vector, that safely delivers it into the body’s tissues.
“This technology doesn’t just have implications for rare diseases like Coats Plus – it could extend to age-related conditions, longevity science, and biohacking applications that impact millions,” Docobo tells Coral Springs Talk.
The challenge is funding. The therapy is expected to cost more than $5 million, but $100,000 is needed immediately to launch the research.
“To begin this process, we are working to raise $100,000 to launch the gene editing research that could save his life and help other children around the world,” said Docobo.
Bryan Docobo, his wife Danielle, sons Liam and Ethan. {courtesy}
To reach that goal, the Coats Plus Foundation is hosting its Virtual 5K on Saturday, August 23. Participants can join from anywhere in the world. Locally, supporters will gather at the Pompano Beach Pier at 8:30 a.m. to run together.
“This event isn’t just about running; it’s about racing against time to save lives,” Docobo shared.
“Every step at this 5K brings us closer.”
Those interested in participating in the 5k can sign up here. Registration is $30 and will remain open until August 22.
Additional information can be found at CoatsPlus.org.
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