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By Dana Talesnik
Isabella and Julia Flysjo, age 4, are part of a first-in-human gene therapy trial at the Clinical Center for their rare disease.
Photo: Niclas Flysjo
It’s agonizing for parents to watch their children suffer and not know how to help them. When parents learn their child has a rare disease, consumed with grief and fear, they try to navigate the confusing medical lingo for diseases that have limited resources and few, if any, effective treatments.
Two families were among those who shared their rare disease journeys during NIH’s Rare Disease Day virtual event on Mar. 1. In both cases, their babies were born seemingly healthy. Then, around age 2, worrisome symptoms appeared that led these families to seek a medical evaluation. ....

Jessica Flysjo , Tracy Dixon Salazar , Jacob Thompson , Niclas Flysjo , Dana Talesnik , Cynthia Tifft , Savannah Salazar , Hampus Flysjo , Julia Flysjo , Clinical Center , Two Families Grapple , Rare Disease Diagnosis , Finding Treatments , Disease Day , Rare Disease Day , Love Someone , Not Rare , சுவடு டிக்சன் சலாசர் , ஜாகோப் தாம்சன் , சவன்னா சலாசர் , மருத்துவ மையம் , ரேர் நோய் நோயறிதல் , நோய் நாள் , ரேர் நோய் நாள் , காதல் யாரோ , இல்லை ரேர் ,