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Toddler's Rare Condition: A "Mask-Like" Face
27 Jul
Summary
- Son born with a rare condition causing a permanent facial paralysis.
- Doctors diagnosed Poland-Moebius Syndrome at three weeks old.
- Despite challenges, the child expresses joy through laughter and sounds.
Jeannie Hochstetler welcomed her son Riley on January 29, 2025, with no prior indication of any health concerns. However, following his birth, it became clear Riley had a rare condition that affected his facial nerves and chest muscles. Doctors were initially puzzled, noting his lack of crying and underdeveloped features.
Riley was transferred to multiple NICU units as specialists worked to diagnose him. At three weeks old, he was officially diagnosed with Poland-Moebius Syndrome, a congenital condition impacting facial expressions and chest muscles. The NIH estimates Moebius Syndrome affects one in 50,000 births, often causing difficulties with swallowing, speech, and motor development.
Despite the diagnosis, which meant Riley would never smile conventionally, his mother found ways to connect. She learned to read his body language and cherish his infectious laugh. Riley has undergone surgeries for strabismus and to correct eyelashes irritating his eyes, and experiences mild hearing loss.
Hochstetler now uses social media to raise awareness about Moebius Syndrome. She emphasizes that Riley’s condition is non-progressive and that with therapy, many aspects can improve. She considers him a blessing, showcasing strength and resilience.
