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What is Sanfilippo Syndrome? One family shares their journey

For ten months specialist after specialist would examine Jack, all the while Amber was doing her own research until she came across a mom's Instagram post about Sanfilippo syndrome. Her daughter looked just like Jack. She had really thick eyebrows, blond hair, thick lips looked just like Jack. The symptoms fit but that would be the worst-case scenario but when Jack underwent testing, she got the dreaded call. "As soon as she said, 'have you heard of Sanfilippo?' I just about fell to my knees that was probably something on my brain for like six months,” said Amber.

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