Remi Battles Pfeiffer Syndrome with a Smile on her Face

Say hello to Remi! Remi, like our previous hero post of Halle, is one of 100,000 babies diagnosed with Pfeiffer Syndrome, a genetic mutation. One of the characteristics of Pfeiffer’s is craniosynostosis which is a premature fusion of the skull. In Remi’s case, she has a bicoronal fusion. Pfeiffer syndrome is categorized in three different types depending on the severity of the symptoms. Remi is a very mild type 1 and has had two surgeries to correct the fusion and expand her skull. Apart from her fusion, she has some deformities in her thumbs and toes which will be corrected next year. Her family says that Remi is the light of their lives and has taught them what strength and resilience looks like. Incredible! Bravery comes in all shapes and sizes - and Remi embodies it with a smile on her face. Thank you Remi’s family for sharing your story with us to inspire others battling with pediatric rare disease!