Bruno Sanfilippo - Tangible
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Bruno Sanfilippo - Subliminal Pulse
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discogs.com
Aquarelle Sur Bois, by Bruno Sanfilippo
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bandcamp.com
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bandcamp.com
Lost & Found, by Bruno Sanfilippo
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bandcamp.com
Another day finding an old video showing skills Merrick has lost to #Sanfilippo syndrome He doesn’t have these play or language skills now 💔 He does still love seeing planes flying up high in the sky though 💜 #childhooddementia #raredisease #airforcemuseum #approvehopenow | Hope for Merrick
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Another day finding an old video showing skills Merrick has lost to …
1.4K views6 months ago
FacebookHope for Merrick
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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It’s incredibly rare to hear directly from someone living with Sanfilip…
251.1K views6 months ago
FacebookSaving Sadie Rae: Cure Sanfilippo
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This is Merrick he’s 11 now and last year we found out he has Sanfilip…
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Sadie may burp and throw hands like a grown man, but she’s a big f…
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Even though she can’t verbalize it, there is still so much joy in her he…
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TBH, we’re still coming to grips with using any restraints on Sadie, an…
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FacebookSaving Sadie Rae: Cure Sanfilippo
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Sadie still gets an A in creativity! #sanfilipposyndrome #abcs #savi…
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I miss this time in our lives when I could still imagine a bright future f…
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In my feels this Friday. Longing for simpler times when we were still f…
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