Mom Shares Life Of Her Daughter With Sanfilippo Syndrome 💕
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Mom Shares Life Of Her Daughter With Sanfilippo Syndrome 💕
4.5K viewsOct 18, 2024
YouTubeCaters Clips
This is Trenton's story. Our journey with Sanfilippo syndrome | Cure Sanfilippo Foundation
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This is Trenton's story. Our journey with Sanfilippo syndrome | Cure Sanfilippo Foundation
35K viewsSep 1, 2023
FacebookCure Sanfilippo Foundation
Carter has Sanfilippo syndrome, a rare and fatal condition
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Carter has Sanfilippo syndrome, a rare and fatal condition
1.3K views4 months ago
YouTubeJen Sarkar
Home Healthcare for Sanfilippo Syndrome
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Home Healthcare for Sanfilippo Syndrome
1.5K views1 month ago
YouTubeMaxim Healthcare
Sanfilippo Syndrome has taken her ability to talk, to walk and run, to eat by mouth, to swing and to be a "typical," and healthy child with a beautiful future ahead of her. It has brought on seizures, movement disorders, dystonia, myoclonus, vision and hearing impairment, the need for a feeding tube, damage to her respiratory system, sundowning, days without sleep, neurological storms, muscle contractures, muscle deterioration, organ damage, nerve damage, cellular damage and so, so much | Haidyn
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Sanfilippo Syndrome has taken her ability to talk, to walk and run, to eat by mouth, to swing and to be a "typical," and healthy child with a beautiful future ahead of her. It has brought on seizures, movement disorders, dystonia, myoclonus, vision and hearing impairment, the need for a feeding tube, damage to her respiratory system, sundowning, days without sleep, neurological storms, muscle contractures, muscle deterioration, organ damage, nerve damage, cellular damage and so, so much | Haidyn
21.1K viewsOct 6, 2025
FacebookHaidyn’s Hope - A Cure for Sanfilippo Syndrome
Did you know there is a childhood version of Alzheimer’s? It’s called Sanfilippo Syndrome
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Did you know there is a childhood version of Alzheimer’s? It’s called Sanfilippo Syndrome
899 views3 months ago
YouTubeJen Sarkar
Sanfilippo Syndrome is so much more than just the facial characteristics and features. If you are concerned, I always suggest that you reach out to your PCP and discuss genetic screening. Also, I suggest that you go for full genetic screening if possible - for example, a whole exome test. Which will test for most, if not all, genetic conditions known. Just because you may think it could be Sanfilippo syndrome, does not mean it is. It also does not mean that your child couldn’t have another genet
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Sanfilippo Syndrome is so much more than just the facial characteristics and features. If you are concerned, I always suggest that you reach out to your PCP and discuss genetic screening. Also, I suggest that you go for full genetic screening if possible - for example, a whole exome test. Which will test for most, if not all, genetic conditions known. Just because you may think it could be Sanfilippo syndrome, does not mean it is. It also does not mean that your child couldn’t have another genet
26K viewsJun 25, 2024
FacebookHaidyn’s Hope - A Cure for Sanfilippo Syndrome
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Sanfilippo syndrome is so much more than just facial features. We put this together because we often get messages from people asking if their child might have Sanfilippo based on pictures. You cannot diagnose this disease based on pictures alone. Here are other symptoms provided by Cure Sanfilippo Foundation : Early Symptoms of Sanfilippo:-Transient Tachypnea Of Newborn*(fast breathing after birth)-Coarse Facial Features*(frontal bossing/prominent forehead, full lips and nose)-Prominent, thick e
149.3K viewsMay 23, 2025
FacebookSaving Sadie Rae: Cure Sanfilippo
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Girl With Sanfilippo Syndrome Makes Precious Memories With Family ❤️
8.3K viewsOct 21, 2024
YouTubeCaters Clips
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Sanfilippo Syndrome is a form of childhood dementia. | Haidyn’s Hope - A Cure for Sanfilippo Syndrome
17.1K viewsOct 13, 2025
FacebookHaidyn’s Hope - A Cure for Sanfilippo Syndrome
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The compilation you didn’t know you needed! New here? Sadie has a neurodegenerative disease called Sanfilippo syndrome. She doesn’t really understand cleaning so we don’t have any expectations. We just let her “help” when she wants to. #cleaning #sanfilipposyndrome #kidscleaning #vacuumtherapy #savingsadierae | Saving Sadie Rae: Cure Sanfilippo
13K viewsApr 17, 2025
FacebookSaving Sadie Rae: Cure Sanfilippo
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Surprising Sadie will always be my favorite, even if it takes her longer and longer to recognize me. 💔 New here? Sadie has Sanfilippo syndrome, which causes childhood dementia along with many other symptoms. There is currently no cure, but we share our story so that one day, no child will have to go through this. #surprise #sanfilipposyndrome #niece #aunt | Saving Sadie Rae: Cure Sanfilippo
37.8K viewsJan 3, 2025
FacebookSaving Sadie Rae: Cure Sanfilippo
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Sadie's Journey with Sanfilippo Syndrome: A Heartfelt Story
7.7M viewsApr 18, 2024
TikToksavingsadierae
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Understanding Sanfilippo Syndrome: Key Facial Features
6.7M viewsApr 25, 2025
TikToksaving_liv
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Maladie de Sanfilippo : symptômes, causes et sensibilisation
33.3K views2 weeks ago
TikToksissiana38
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Understanding Sanfilippo Syndrome in Children
1.8M viewsMar 12, 2024
TikTokloveforlivi
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As children with Sanfilippo Syndrome get older the features this disease is known for become more and more prominent. #lovelogan #sanfilippo #sanfilipposyndrome #features #thosebrowstho
1.6M viewsDec 13, 2023
TikToklove_logan07
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Logan's Struggle with Sleep Disturbances due to Sanfilippo Syndrome
1.2M viewsMar 25, 2024
TikToklove_logan07
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Sanfilippo Syndrome is a neuro degenerative terminal genetic disorder. Before you rush to the comments, Liv has almost no understanding of anything I say. I freely talk about her disease with her around, because thankfully she’s oblivious. #genetics #sanfilipposyndrome #savingliv #fyp #childhoodalzheimers
397.5K views7 months ago
TikToksaving_liv
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Liv's Journey with Sanfilippo Syndrome Awareness
473.7K viewsMay 2, 2025
TikToksaving_liv
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