Sanfilippo Syndrome Facts ✨ *sorry for being behind the last several days* 💜 -but this is a long one and should cover some missed time. •What Are The Symptoms• Children with Sanfilippo Syndrome appear healthy at birth and typically do not show obvious signs of the disease. However, even early on, many common childhood conditions are consistently seen in children with Sanfilippo that are related to the disease. These can be easily dismissed and families are often reassured that the child “will g
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It’s incredibly rare to hear directly from someone living with Sanfilippo. Most children lose their speech as the disease progresses in early childhood. But this remarkable 18-year-old with Sanfilippo type B is still able to speak for herself, a gift that only a small number of families ever get to experience. Bridget’s journey is very different from Sadie’s and from most children with Sanfilippo, who decline much more quickly, but it’s no less tragic. In the prime of her life, Sanfilippo is sta
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Here are some cute clips from our trip to Morgan’s Wonderland Sanfilippo info you’ve probably never heard.Sanfilippo varies dramatically. While most children have the severe version of the disease like Sadie, with a life expectancy of 14, some have a slower progressing attenuated version, like Alivia. These children still share many of the same struggles and the outcome is ultimately the same for all of them. Even more rare, there are adults diagnosed with Sanfilippo who have normal or nearly no
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