The Beginning
Docs didn’t look at the Whole Child: It took a year to get the Hurler diagnosis.
Parents of a son with Hurler Syndrome talk about the road to diagnosis and all the signs the doctors missed. “When you have children with multiple problems, look at the whole child. The hand doctor was looking at his hands. the hip doctor was looking at his hips.”
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Docs didn’t look at the Whole Child: It took a year to get the Hurler diagnosis.
The Shock of learning the diagnosis
The Diagnostic Odyssey: It never occurred to me that it would be fatal.
The doctor was very gentle and also clear that there was no treatment at this time.
