05/15/2026
FAMILY FRIDAYS! 💙
Meet JOSIAH, an awesome member of the Channelinh Hope Family.
Josiah lives in the U.S. with his mom, Rebecca, and other loving family members. He was born at 34 weeks during an emergency C-section due to an excess of amniotic fluid.
Josiah was diagnosed with CLIFAHDD, an NALCN-related disease, at 6 weeks old using whole genome sequencing. His most acute symptoms at the time were delayed swallow, fast breathing, and breath holding spells.
Josiah’s mother shares that their biggest challenge has been intractable epilepsy, along with sialorrhea (excessive drooling), and aspiration causing chronic lung disease. The biggest help has been his tracheostomy, which has allowed his family to treat his respiratory issues at home. 🏠
Rebecca also shared that it’s been a challenge educating Josiah’s care team about this ultra-rare disease, as most doctors and other medical providers may have never treated another patient with an NALCN related disease. Josiah is a special boy who is loved very much!
