sanfilipposyndrome hashtag performance
#SanfilippoSyndrome: Rare, devastating neurodegenerative disease. Progressively steals children's abilities. No cure exists, research desperately needed. Families fight tirelessly. Raise awareness, support research, and offer hope.
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The medical workup that lead to Liv’s diagnosis of Sanfilippo Syndrome, also known as childhood Al
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Sanfilippo Syndrome, aka Mucopolysaccharidosis type 3, childhood Alzheimer’s, is slowly taking awa
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Almost 9 years later and I’m still traumatized… thankful Zion doesn’t have Sanfilippo but stil
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Taking my son Liam to visit my parents in Florida, without Liv. While this is so important for him,
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Sometimes life is a b*tch. #sanfilipposyndrome
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Disclaimer: I talk freely about Liv’s fatal genetic disorder in front of her because cognitively s
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Sanfilippo syndrome is a neurodegenerative fatal genetic disorder, caused by a missing enzyme. My hu
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Sharing about an attenuated version of Sanfilippo Syndrome - say hi to @ASHLEY, ALIVIA & FAM and @Ab
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Replying to @shewolfe3 Thank you for this question, I thought it deserved a video reply. Please keep
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Come with us for two appointments today. I share our journey with navigating the medical system as I
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When Liv isn’t feeling good, I’m her main caretaker, and taking breaks is key to staying present
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The happiest girl☺️ #sanfilipposyndrome
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Common questions I get about Liv and Sanfilippo Syndrome. #sanfilipposyndrome #rarediseaseawareness
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I had to jump on this trend, with our own genetic spin. Our daughter Liv has Mucopolysaccharidosis t
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6 year old Sadie had all the emotions. 9 year old Sadie is unimpressed. #sanfilipposyndrome
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Quick Liv update #sanfilipposyndrome
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If you’re happy and you know it then your foot will surely show it! 👟 #sanfilipposyndrome #chi
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