Let’s Raise Awareness of Sanfilippo Syndrome for Rare Disease Day

Let’s Raise Awareness of Sanfilippo Syndrome for Rare Disease Day

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Let’s Raise Awareness of Sanfilippo Syndrome for Rare Disease Day

My 25-year-old daughter Abby has a rare, terminal disease called Sanfilippo syndrome. The best way to describe the disease is to compare it to Alzheimer’s, but in children. It robs her of cognitive abilities, including speech, attention, and memory, and motor abilities, including walking, mobility, and motor planning. Sanfilippo syndrome affects her body’s ability to regulate its temperature, so she no longer sweats. We live in Houston, Texas, where it is hot more often than…

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