Nothing Can Prepare You... My Child with MPS II (Hunter Syndrome)

Marielle Marinoff

We've recently spoke with Marielle, a parent of a child with MPS II (Hunter syndrome). She describes what Hunter syndrome is, her and her husband's initial reaction to their son's diagnosis, a day in the life of her son with the disease.
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About Hunter Syndrome

Hunter syndrome, also known as mucopolysaccharidosis type II, or MPS II, is a lysosomal storage disorder caused by inadequate activity of the enzyme iduronate-2-sulfatase (IDS), which is needed to break down complex sugars produced by the body. The buildup of these complex sugars, known as mucopolysaccharides, interferes with functioning of certain cells and organs, leading to serious complications including developmental delays and mental impairment.

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