A South Florida family has launched the first-of-its-kind foundation for an extremely rare genetic disease that only a handful of children around the world have been diagnosed with, according to doctors at Joe DiMaggio Children’s Hospital.
Two years ago, 6-year-old Liam and 3-year-old Ethan Docobo were diagnosed with Coats plus syndrome — a rare disorder affecting cognitive function, bone mass, eyes, and the gastrointestinal tract. Over a short amount of time, it becomes difficult to walk and talk.
Liam isn’t expected to live past his 14th birthday. Ethan was given another 2-4 years to live.
Recently, Bryan and Danielle Docobo launched the Coats Plus Foundation to help find a cure and treatments for their two sons and others. They want to raise awareness so that other families can connect, share information, and find hope.
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“If we can leave something here for others, wonderful. Save our kids? Even better,” said Bryan Docobo.
As of Tuesday, a GoFundMe page already raised nearly $100,000 to help pay for the Docobos' expensive medical bills.
“Having normalcy on top of some of the more depressing and sad aspects of this condition is a top priority,” said Danielle Docobo. “There can still be a lot of joy in ordinary moments.”
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At times, hospital visits for both kids run weekly. Danielle is a part-time nurse and Bryan still works a full-time job as an attorney in Coral Springs.
Dr. Monica Arroyo of Joe Dimaggio Children’s Hospital in Hollywood says there is no cure for Coats plus syndrome, but treatments are available through compassionate care. These treatments have helped to slow calcification and cyst growth, according to Bryan Docobo.
Both children have been getting their treatments at Joe DiMaggio since their diagnosis.
“We are treating with an antibody infusion that helps blood vessels,” said Dr. Arroyo. “We have a complex care center that is helping us navigate through all of those intricacies.”
Dr. Arroyo says Coats plus syndrome was only identified in 2013. There could be many undiagnosed cases due to limited research on the genetic disease.
