Emily and Darren
Parents of Parker (15) Christopher (4) and Jacob (2). Christopher has Hurler Syndrome (MPS Type 1) and has had a stem cell transplant.
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.
Enzyme replacement therapy, Stem Cell Transplant, and Living into the Unknown
As a parent, you do what you have to do. (stem cell transplant)
We don’t know what the future holds and how we handle that. (post stem cell transplant)
