It was a cool spring night in early 2015 when we received the worst news of our lives. Our son, Will, had been diagnosed with Sanfilippo syndrome. How were we going to face this new journey? Within a few hours, we knew we wouldn’t have to face it alone.
The rare disease community faces many challenges. Medical costs, caring for an affected family member, and getting them to doctors’ appointments are only a few. The emotional toll the disease takes on the entire family, including extended family, can also be extreme. Then there is education and advocacy.
My favorite animals are sharks. They’ve always fascinated me. An interesting fact I’ve learned is that sharks can smell blood in very small concentrations in water — as low as one part per million! As I contemplated this column, this shark fact, a Sanfilippo event I attended last month,…
I am tired. Caring for my 25-year-old daughter, Abby, whose body is giving up on her, is tiring. She has Sanfilippo syndrome, a cruel, relentless disease that is stealing her from me. When I have time to sit and gain perspective of the situation and face the fact that…
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