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@anhlasupersibidi: Em cứ đi đi …🥀🥀 #highlight #xh #florentino #lienquanmobile_tiktok #aov

Kiếm sĩ sĩ vương
Kiếm sĩ sĩ vương
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Thursday 14 May 2026 08:18:46 GMT
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This will forever be one of my favorite videos of Sadie. I remember sitting there wondering if this was Sadie’s peak. She was not quite three years old, and I knew most children with Sanfilippo Syndrome began having developmental delays around that age. Fortunately, she got into a clinical trial soon after, and that delayed the regression for a few years until the trial ended. It’s so bittersweet to look back today, knowing she no longer has the same verbal or reasoning abilities. We need a cure! FDA, please grant Accelerated Approval to the promising drugs in development ASAP so others don’t have to watch their kids slip away from this devastating disease. #onthisday #sanfilipposyndrome #childhooddementia #fda
This will forever be one of my favorite videos of Sadie. I remember sitting there wondering if this was Sadie’s peak. She was not quite three years old, and I knew most children with Sanfilippo Syndrome began having developmental delays around that age. Fortunately, she got into a clinical trial soon after, and that delayed the regression for a few years until the trial ended. It’s so bittersweet to look back today, knowing she no longer has the same verbal or reasoning abilities. We need a cure! FDA, please grant Accelerated Approval to the promising drugs in development ASAP so others don’t have to watch their kids slip away from this devastating disease. #onthisday #sanfilipposyndrome #childhooddementia #fda

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