We started sharing Sadie’s story on social media nearly seven years ago because we wanted to spread awareness of Sanfilippo Syndrome by showing what Sadie is capable of. Now we’re mostly going the other direction as Sadie is regressing. It is heartbreaking but we are still so proud of her every single day. Hey joy despite the cruel circumstances is an inspiration. We will never stop fighting. #sanfilipposyndrome #curesanfilippo #childhooddementia | Saving Sadie Rae: Cure Sanfilippo
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We started sharing Sadie’s story on social media nearly seven years ago because we wanted to spread awareness of Sanfilippo Syndrome by showing what Sadie is capable of. Now we’re mostly going the other direction as Sadie is regressing. It is heartbreaking but we are still so proud of her every single day. Hey joy despite the cruel circumstances is an inspiration. We will never stop fighting. #sanfilipposyndrome #curesanfilippo #childhooddementia | Saving Sadie Rae: Cure Sanfilippo
164.5K viewsMar 17, 2023
FacebookSaving Sadie Rae: Cure Sanfilippo
Living in a different state, I don’t get nearly enough moments like this, so we make the most of it. We eat ice cream, make messes, say bad words, and giggle as all nieces and aunties should. My goal in sharing Sadie’s story has always been to show the girl beyond the Sanfilippo diagnosis. Yes, it impacts every part of her life, but she still feels and loves deeply. She has more joy than most people will ever know. Her ability to share that joy with others is remarkable. Even though she’s lost m
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Living in a different state, I don’t get nearly enough moments like this, so we make the most of it. We eat ice cream, make messes, say bad words, and giggle as all nieces and aunties should. My goal in sharing Sadie’s story has always been to show the girl beyond the Sanfilippo diagnosis. Yes, it impacts every part of her life, but she still feels and loves deeply. She has more joy than most people will ever know. Her ability to share that joy with others is remarkable. Even though she’s lost m
103.6K views10 months ago
FacebookSaving Sadie Rae: Cure Sanfilippo
I never thought so much would change in three months. Sadie struggles with story time now and words in general. But that’s the nature of Sanfilippo Syndrome. We’re grateful to have so much of Sadie’s silly personality recorded. #sanfilipposyndrome #childhooddementia | Saving Sadie Rae: Cure Sanfilippo
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I never thought so much would change in three months. Sadie struggles with story time now and words in general. But that’s the nature of Sanfilippo Syndrome. We’re grateful to have so much of Sadie’s silly personality recorded. #sanfilipposyndrome #childhooddementia | Saving Sadie Rae: Cure Sanfilippo
123.7K viewsJun 29, 2023
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Storytime! Wait for the cutest giggle 🤭. Sadie’s stories are the best bc they are so silly but they’re also a way for us to informally track her cognitive regression due to Sanfilippo Syndrome. I haven’t noticed a huge change in her storytelling over the last few months so I’m thankful for the little wins. Do you want to hear more of Sadie’s stories? We do this often but I don’t always share. Car seat disclaimer: We’ve seen all your comments on the previous video. This was filmed at the same ti
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Storytime! Wait for the cutest giggle 🤭. Sadie’s stories are the best bc they are so silly but they’re also a way for us to informally track her cognitive regression due to Sanfilippo Syndrome. I haven’t noticed a huge change in her storytelling over the last few months so I’m thankful for the little wins. Do you want to hear more of Sadie’s stories? We do this often but I don’t always share. Car seat disclaimer: We’ve seen all your comments on the previous video. This was filmed at the same ti
43.1K viewsMay 11, 2023
FacebookSaving Sadie Rae: Cure Sanfilippo
Then vs. Now 💔 Three years ago, Sadie would run into auntie’s arms, bursting with joy. She used to cry when Jessica left. Now, she barely looks up from her iPad. She doesn’t remember how long it’s been since she’s seen her bestie. The iPad helps soothe Sadie and bring calm to her world. When she lightly smacks Jessica for taking it away, it’s not defiance. It’s Sanfilippo. This disease impacts impulse control, emotional connection, memory, and so much more. There is still no approved treatment.
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Then vs. Now 💔 Three years ago, Sadie would run into auntie’s arms, bursting with joy. She used to cry when Jessica left. Now, she barely looks up from her iPad. She doesn’t remember how long it’s been since she’s seen her bestie. The iPad helps soothe Sadie and bring calm to her world. When she lightly smacks Jessica for taking it away, it’s not defiance. It’s Sanfilippo. This disease impacts impulse control, emotional connection, memory, and so much more. There is still no approved treatment.
65.5K viewsJul 22, 2025
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We are filling this page with Sadie’s voice because one day, this is all we’ll have. Memory is an interesting thing. Some days, Sadie remembers entire stories like this. On other days, she barely remembers a few words. We’re grateful for every single word. #sanfilipposyndrome #dementiaawareness #childhooddementia #bedtimestory #goodnight #savingsadierae | Saving Sadie Rae: Cure Sanfilippo
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We are filling this page with Sadie’s voice because one day, this is all we’ll have. Memory is an interesting thing. Some days, Sadie remembers entire stories like this. On other days, she barely remembers a few words. We’re grateful for every single word. #sanfilipposyndrome #dementiaawareness #childhooddementia #bedtimestory #goodnight #savingsadierae | Saving Sadie Rae: Cure Sanfilippo
81K viewsMar 17, 2024
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6 year old Sadie had all the emotions. 9 year old Sadie is unimpressed. | Saving Sadie Rae: Cure Sanfilippo
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6 year old Sadie had all the emotions. 9 year old Sadie is unimpressed. | Saving Sadie Rae: Cure Sanfilippo
524.7K viewsMar 25, 2025
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Some things never change! Wait for one of the original episodes of Sadie and Poppy shopping! | Saving Sadie Rae: Cure Sanfilippo
19.1K viewsMar 4, 2022
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This gives you a little glimpse into why there aren’t many Sadie & Poppy shopping videos anymore. Even with Auntie tagging along to help, it was a lot trying to manage Sadie, get groceries, and film. After we stopped filming while unloading the cart, Sadie bit the end of a banana—peel and all. So, for everyone’s safety, we keep the filming to a minimum. Thankfully, Caroline’s Cart and iPads exist and make shopping easier and safer for the whole family. #sanfilipposyndrome #grandparents #childhoo
81.3K viewsMay 28, 2025
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Night night 💤 🧜‍♀️ | Saving Sadie Rae: Cure Sanfilippo
106.6K viewsApr 14, 2025
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Sadie turns 8 in a month. It’s hard to see her body getting older while her brain is going backward because of Sanfilippo Syndrome. If you’re new to our story, Sanfilippo regression typically starts around age 3 or 4. When Sadie was 2, she was more advanced cognitively than many neurotypical kids. We need something to slow this disease down ASAP. #sanfilipposyndrome #dementia #neurodegenerativediseases | Saving Sadie Rae: Cure Sanfilippo
434.3K viewsFeb 5, 2024
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