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
We waited three long years after Sadie’s diagnosis to get her into a clinical trial—three years of watching and hoping, desperate to access something before Sanfilippo caused too much irreversible brain damage. We were incredibly fortunate when she was finally enrolled in an enzyme replacement therapy (ERT) trial from ages 3 to 5. Many families never get that chance. We know this trial gave us more precious time with Sadie, and for that, we’re deeply grateful. We would give anything to get her i
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We waited three long years after Sadie’s diagnosis to get her into a clinical trial—three years of watching and hoping, desperate to access something before Sanfilippo caused too much irreversible brain damage. We were incredibly fortunate when she was finally enrolled in an enzyme replacement therapy (ERT) trial from ages 3 to 5. Many families never get that chance. We know this trial gave us more precious time with Sadie, and for that, we’re deeply grateful. We would give anything to get her i
81.5K viewsJun 6, 2025
FacebookSaving Sadie Rae: Cure Sanfilippo
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
FacebookSaving Sadie Rae: Cure Sanfilippo
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
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
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
FacebookSaving Sadie Rae: Cure Sanfilippo
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
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It’s all about second chances… Mr. Boots is one lucky pup. Did you know that his back feet were purposely cut off? | Saving Sadie
159 viewsSep 3, 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
81K viewsMar 17, 2024
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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
FacebookSaving Sadie Rae: Cure Sanfilippo
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Not bad for a dog that had his back feet purposely cut off! Mr. Boots is living his best life thanks to you helping him get the prosethics he needs! So many zoomies and digs! Getting Mr. Boots his boots is an ongoing process throughout his life and we appreciate all the donations and support you have given to Saving Sadie. If you are looking for a nonprofit to support for Giving Tuesday tomorrow, be sure to consider Saving Sadie! | Saving Sadie
230 views11 months ago
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We didn’t know if Sadie would ever walk after her severe brain hemorrhage at birth. We’re grateful that she finally started walking at age 2, and we’re doing everything we can to retain her mobility for as long as possible. She also does PT, wears AFOs, and gets Botox injections in her ankles. #sanfilipposyndrome #mobility #exercise | Saving Sadie Rae: Cure Sanfilippo
672.2K viewsJun 23, 2025
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Every little girl needs a Poppy! She stayed in the ball pit for a long time so I think she’s a fan. Don’t even get us started on Sadie’s outfit tho 😅 #sanfilipposyndrome #grandparents #grandpa #grandfather #savingsadierae | Saving Sadie Rae: Cure Sanfilippo
158.9K viewsMar 18, 2024
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My beautiful little boy. You are safe now… @followers | Saving Sadie
1K viewsSep 30, 2025
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Dutch & Arthur SAVE Sadie from Micah’s Madness! 💀 | RDR2
770 views6 months ago
YouTubeThe Walkthrough Legend
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In the chaos of a flood, one small act of kindness made all the difference. Sadie was swept away in the confusion—but she was never forgotten. 💔🐾 👉 Read the full story of how she was saved and reunited in the first comment 👇👇 #DogRescue #HopeAndHealing #AnimalRescue #FloodHeroes #CommunityStrength #RescueStory #SecondChances #SavingLives | Saving Harmony
110.2K views10 months ago
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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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Stick around to see Sadie as a silly three-year-old. This girl has always made us laugh! 🤭 I’m not sure if her sense of humor distracts us from the pain of what’s to come or makes it worse, knowing what we’re all losing. Either way, we try to soak up all the silliness. #sanfilipposyndrome #sillykids #childhooddementia #savingsadierae | Saving Sadie Rae: Cure Sanfilippo
196.1K viewsApr 9, 2025
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We are back home! The team did X-rays and put sealant on. Luckily, Sadie didn’t have any cavities or need any teeth pulled. Like any good southern girl, she got @bojangles on the way home. Thank you for sending your love today! | Saving Sadie Rae: Cure Sanfilippo
143K viewsMay 6, 2025
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One year ago today Sadie’s clinical trial ended and our hope for her future vanished. It was clearly helping because Sadie is doing very well for a 6 year old with Sanfilippo. She still talks all the time but her words are getting more confused. Luckily she is still healthy but we know all of this can change her quickly with Sanfilippo. Sadie’s story sadly is not unique. Clinical trials end all the time. In just the last year, four clinical trials for Sanfilippo have been cancelled or postponed.
6.5K viewsApr 22, 2022
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Sadie still knows how to make us laugh! #sanfilipposyndrome #savingsadierae | Saving Sadie Rae: Cure Sanfilippo
212.4K viewsJun 12, 2024
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I think Sadie just invented a new food. Who wants appleberry cobbler this weekend?! 🍎 🫐 #sanfilipposyndrome #savingsadierae | Saving Sadie Rae: Cure Sanfilippo
416.1K viewsJun 28, 2024
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Just a little Sadie joy to make your Monday! I promise her diet includes more than ice cream 😜 #sanfilipposyndrome #icecreamlover #familytime #savingsadierae | Saving Sadie Rae: Cure Sanfilippo
341.4K viewsJul 15, 2024
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saving sadie RDR2 Mission Horsemen Apocalypses
611 views4 months ago
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Labrador “Sadie” Pulled from Pacific to Safety 🐶
1.1K views11 months ago
YouTubePAWS OF FRIENDSHIP
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The Dog Everyone Gave Up On Saved Him ❤️🐶
27K views1 month ago
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Sadie & Arthur Save Abigail | RDR2 Chapter 6
1K views1 year ago
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Sadie Queen: Saving the Best for Last ❤️
78.7K viewsSep 17, 2024
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Sadie's Journey with Sanfilippo Syndrome: A Heartfelt Story
7.7M viewsApr 18, 2024
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