Searching for a diagnosis and finding a community

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    Imagine you’re a parent and your child is not developing like other children her age, but doctors can’t tell you why. You take her from appointment to appointment searching for a diagnosis, trying to figure out what the future holds for her. Will she walk? Learn to read? Hold down a job?

    Marybeth Hassell searched for more than seven years for a diagnosis for her daughter’s rare genetic disorder, which was only recently discovered.

    When her now 10-year-old daughter Katie was finally diagnosed with Koolen-de Vries syndrome, Marybeth Hassell found solace and answers from other parents she met online.

    Click on the audio link above for the Hassel family’s full story. 

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