Clara is a funny, curious, and deeply sensitive girl, full of personality, imagination, and heart. She lives in Chicago and is a proud big sister to Alice.

Clara was diagnosed with Primrose Syndrome at age six. From early on, she has navigated a wide range of medical and developmental challenges. She experiences low muscle tone, strabismus, learning delays, attention differences, auditory processing challenges, and speech clarity differences. She works every day to keep pace in a world that doesn’t always meet her where she is.

Clara works regularly with a roster of nearly ten specialists who support her learning, speech, occupational therapy, and physical therapy needs. She is also followed closely by eight medical providers, including an ophthalmologist, audiologist, neurologist, geneticist, ENT, endocrinologist, psychiatrist, psychologist, and orthotist. This team plays a critical role in helping Clara navigate both the visible and invisible parts of her journey.

Sharing Clara’s story is one way we hope to shine a light on what life with Primrose Syndrome can look like, and why families like ours are working to build a better future for children like her.