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Jan. 26, 2021


Mike Hu, California Rare Action Network Volunteer Ambassador

Posted by Sean Roberts

Newborn Screening

I have two boys who were diagnosed with a rare genetic disease called mucopolysaccharidosis type II (MPS II, aka Hunter syndrome). My sons were diagnosed around the same time, at the ages of four and one respectively. Nine years after starting treatment, the younger one, who began treatment at a younger age (thanks to his brother’s diagnosis), is faring far better than his elder brother in many ways. The most likely reason for this is his early treatment. Imagine if they had both been diagnosed as newborns and treated immediately.