Jacksonville woman's tribute to late brother shines light on rare NBIA disease

JACKSONVILLE, Fla. — A Jacksonville woman is honoring her late brother by shining a light on a rare disease.

Daniel Hopkins was just 21 years old when he passed away from neurodegenerative brain iron accumulation, or NBIA. It’s a rare, inherited neurological disorder where iron builds up in the brain.

When Daniel Hopkins was first born, he was a healthy baby.

However, as he started to get older, his sister, Kairstin Quigley tells First Coast News things began to quickly change

“About five years old, he started having regressions,” said Quigley, “He was losing muscle weakness in his legs.”

“Then from 10 to 11 he was wheelchair bound,” she said.

Daniel was diagnosed with neurodegeneration brain iron accumulation, NBIA. it’s a rare genetic disorder, characterized by extra iron buildup i