Hope Springs from Rare Diagnosis

Six-year-old Deconc Bradley keeps smiling through Jarcho-Levin Syndrome, a rare genetic condition that comes with a grim diagnosis.

Like any girl her age, 6-year-old Deonc Bradley loves glittery, blingy clothes and doesn’t let anything stop her. What’s different about Deonc is that she requires a trachea and ventilator everywhere she goes.

Deonc was born with Jarcho-Levin Syndrome, a rare genetic condition that comes with a grim diagnosis. Children like Deonc, who has the most severe form of the condition, rarely live past 2 years of age because their lungs and rib cage are too small to support a growing body.

"When she was born, her father and I met with her NICU team at Texas Children’s and her geneticist Dr. Brendan Lee. We put our heads together and came up with a plan," recalls her mother Desiree. "I got online and found out we were in unchartered territory."

Deonc continues to break the mold today. She attends kindergarten in a mainstream elementary school and walks, runs and plays anywhere her ventilator can go. While her body is undersized because of her breathing problems, "mentally she is fine," says Desiree.

Deonc maintains close ties to her medical team at Texas Children’s because her condition makes her susceptible to lung infections and because she undergoes surgery every six months to expand her chest cavity, allowing her lungs to grow.

"The hope is that eventually she will be able to breathe on her own," explains Desiree. "Until then, she’s my smiling, dancing, waving social butterfly."