Rome and Caliyah Johnson Pfeiffer syndrome is a rare genetic disorder causing complications with the skull and airway. It’s characterized by premature fusion of certain skull bones as well as abnormally broad and deviated thumbs and great toes. Most also have protruding eyes and conductive hearing loss.
Caliyah Johnson, now 13 months, was born with Pfeiffer syndrome. But she “continues to crush milestones” according to the folks at Seattle Children’s Hospital, where she has undergone multiple surgeries.
Her parents,
Rome and Falesha Johnson, are doing everything they can to raise awareness and combat stigma about their daughter’s condition. Falesha documents her family’s hospital journey in a blog and YouTube Channel.