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Raising an Adult Child With Sanfilippo Syndrome Is Tiring

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 this disease will end her life at some point, I am incredibly sad. But the day-to-day care she needs is so tiring. I have to be sure someone is caring for her while I write this column.

Source: https://sanfilipponews.com/2021/07/16/raising-adult-child-with-sanfilippo-tiring/

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