The Beginning
Undiagnosed: “28 years and we still don’t know exactly”
June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, describes living in the not-quite-certain-what-it-is-space, not knowing the prognosis. “If you don’t know what it is, where do you go? Early on, I thought, if we knew what it was, we could do a better job of caring for her. .. And then I adapted to not having a label.” How do parents plan ahead? When to plan ahead? Living with the unpredictability.
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Undiagnosed: “28 years and we still don’t know exactly”
Tay-Sachs, Twin fathers and their diagnostic journey with their two children
A New Diagnosis: Finding Your Bearings
Docs didn’t look at the Whole Child: It took a year to get the Hurler diagnosis.
