*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.
Rome went viral last month with one of his letters penned to Caliyah, telling her how strong and beautiful she is.
“Baby, you’re a fighter of fighters. You got this,” the letter begins. “You don’t know how strong you are. But that spirit and those hands can move a mountain. Baby, we love you. We’re strong because you’re strong.”
Watch Rome recite his letter and view Caliyah’s journey below:
Check out this video from Falesha’s YouTube channel showing Caliyah’s “First Lake Experience” in August. Also on the channel are that baby’s “Family Ocean Vacation,” various doctor appointments, surgeries, daily routines and more.
Rome details more of his own upbringing in this Seattle Children’s Facebook post about Caliyah’s journey below: