Living with Childhood Dementia (Sanfilippo Syndrome): Sadie's Story
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Living with Childhood Dementia (Sanfilippo Syndrome): Sadie's Story
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Living with Childhood Dementia (Sanfilippo Syndrome)
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Understanding Childhood Dementia and Sanfilippo Syndrome
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Understanding Childhood Dementia and Sanfilippo Syndrome
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TikTokskynews
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
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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
FacebookSaving Sadie Rae: Cure Sanfilippo
Saving Leni: One Mum's Fight Against Childhood Dementia | Sanfilippo Syndrome Awareness | Emily
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Saving Leni: One Mum's Fight Against Childhood Dementia | Sanfilippo Syndrome Awareness | Emily
539 views3 months ago
YouTubeNot Your Typical
Living With Childhood Dementia (Sanfilippo Syndrome)
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Living With Childhood Dementia (Sanfilippo Syndrome)
1 views3 months ago
YouTubeCHISOM VIVIAN
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You may remember the story of Morgan, a mother from Louisiana, and her three-year-old daughter Lydia. She is a bright, joyful, and loving girl living with Sanfilippo Syndrome, a rare and terminal genetic disorder also called childhood Alzheimer’s. Many people have come together to support Lydia, but the fight continues. Details>> www.ktalnews.com/news/louisiana/hope-for-lydia-louisiana-familys-fights-to-save-3-year-old-with-sanfilippo-syndrome/ | KTAL NBC 6
260K views9 months ago
FacebookKTAL NBC 6
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Woman Thought Baby's Facial Feature Was Trait from Dad, Then Realizes It's Symptom of Childhood Dementia (Exclusive)
Jun 13, 2024
PeopleVirginia Chamlee
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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
265.4K views10 months ago
FacebookSaving Sadie Rae: Cure Sanfilippo
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Living with Sanfilippo Syndrome: Reagan's Story
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YouTubeNationwideChildrens
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My son has childhood dementia because of Sanfilippo syndrome. A rare neurodegenerative disease that causes progressive skill loss and a very short life. When he was 3 years old he had not started regressing from the disease yet. He was sassy and funny and determined to do things his own way. His only diagnosis at this point was a speech delay we thought he would grow out of. When he was 5 we saw him start to regress and we had no idea why. He had ASD added to his diagnoses. There is a therapy th
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Mom of 7-year-old with 'childhood dementia' shares story to fight for a cure l GMA
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YouTubeGood Morning America
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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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Run for Lydia’s fight with Sanfilippo Syndrome also known as childhood Alzheimer’s! Help share Lydia’s story with the family’s video on their GoFundMe linked www.gofundme.com/savelydia | KTBS 3 News
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Childhood Dementia Is Taking Her Life… This Is Sadie’s Story 💔
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Kenny Cridge, 77, was named by the Guinness World Records in 2008 as the oldest living person with Down's syndrome. https://goo.gl/g6UUbm | AsiaOne
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Family battles rare disorder: seeking hope for a cure for Sanfilippo Syndrome type B
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Unusual eyebrows revealed rare disease in two-year-old
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