She gets her moves from DaDa! 😜 Jason Haywood. Ashley Smith Haywood | Saving Sadie Rae: Cure Sanfilippo
0:30
She gets her moves from DaDa! 😜 Jason Haywood. Ashley Smith Ha…
2.1K viewsDec 19, 2018
FacebookSaving Sadie Rae: Cure Sanfilippo
Girl’s Viral Fight with Sanfilippo Sparks New Hope for Families
2:09
Girl’s Viral Fight with Sanfilippo Sparks New Hope for Families
Oct 14, 2024
MSNOkay,Really
Sadie Rae Haywood, born in March 2016, spent her first 72 days in the hospital after a brain bleed. Months later, she was diagnosed with Sanfilippo Syndrome Type A, a rare and fatal genetic disorder often called "childhood Alzheimer's" because it destroys a child’s ability to walk and talk. Despite doctors doubting she would hit major milestones, Sadie defied the odds, learning to walk and speak her first words. Her parents chose to focus on love, not loss, and through their Saving Sadie Rae cam
0:07
Sadie Rae Haywood, born in March 2016, spent her first 72 days in th…
38.2K views5 months ago
FacebookFactopediahq
Before Sadie, I had never heard of Sanfilippo Syndrome, even as a medical provider. Today, on World Sanfilippo Awareness Day, I’m sharing more of her story so you all understand what this rare disease is and how it affects her life and ours. Sanfilippo is a genetic neurodegenerative disorder, often called ‘childhood Alzheimer’s.’ Kids with Sanfilippo are born looking perfectly healthy, but their bodies are missing an enzyme needed to break down a natural sugar. Over time, that buildup damages th
4:35
Before Sadie, I had never heard of Sanfilippo Syndrome, even as a m…
3.1K views4 months ago
FacebookSierra Davis-Haywood
Sanfilippo mom Ashley Haywood on her daughter's clinical trial, and the toll it took on her marriage
4:22
Sanfilippo mom Ashley Haywood on her daughter's clinical trial, and th…
432 viewsJul 1, 2024
YouTubeSanfilippo Project
Sanfilippo Syndrome is genetically inherited from both parents. Children are born with the disease after receiving two gene mutations on a specific gene (one mutation from each parent). We had no idea that Sanfilippo Syndrome existed or that Haidyn was sick until she was diagnosed at age 5, after years of a lengthy medical history and unanswered questions. It was not tested for during pregnancy or at birth. She was first diagnosed with autism at age 3, as the brain damage began to cause sensory
0:53
Sanfilippo Syndrome is genetically inherited from both parents. Child…
71.4K viewsJan 3, 2023
FacebookCarrie & Haidyn Fowler
Living with Childhood Dementia (Sanfilippo Syndrome)
25:29
Living with Childhood Dementia (Sanfilippo Syndrome)
988.7K viewsJan 5, 2023
YouTubeSpecial Books by Special Kids
1:13
Sanfilippo Syndrome, otherwise known as Childhood Alzheimer’s, …
6.2K views11 months ago
FacebookFox Carolina News
3:16
Triad girl battles rare childhood disease as mother fights for aware…
1 week ago
MSNWFMY-TV Greensboro
1:08
Sanfilippo Syndrome is a form of childhood dementia, and sadly yet…
25.9K viewsJun 17, 2024
FacebookCarrie & Haidyn Fowler
1:06
Sanfilippo Syndrome has taken her ability to talk, to walk and run, to e…
20.5K views6 months ago
FacebookHaidyn’s Hope - A Cure for Sanfilippo Syndrome
5:07
Dealing with a Diagnosis: Life Update on Sanfilippo Syndrome A…
10.9K viewsMay 8, 2024
TikTokloveforlivi
30:39
Sanfilippo Syndrome with Ashley Haywood (Sadie's Mom)
1.2K viewsOct 26, 2022
YouTubeMoments of Joy Podcast
4:39
Life With Sanfilippo Syndrome
3.8K viewsJun 28, 2022
YouTubeCaters Video
Sanfilippo Syndrome: What It Is, Signs, Symptoms, Diagnosis, and …
Mar 3, 2023
osmosis.org
What is Sanfilippo Syndrome | Cure Sanfilippo Foundation
1 year ago
curesanfilippofoundation.org
0:23
Sanfilippo Syndrome Facts ✨ *sorry for being behind the last several d…
11.8K viewsNov 8, 2020
FacebookCarrie & Haidyn Fowler
0:16
Sanfilippo Syndrome can't steal the sunshine in her heart. | Haidyn’s H…
12.7K views6 months ago
FacebookHaidyn’s Hope - A Cure for Sanfilippo Syndrome
3:27
Sanfilippo Syndrome is so much more than just the facial character…
24.4K viewsJun 25, 2024
FacebookHaidyn’s Hope - A Cure for Sanfilippo Syndrome
0:20
What is Sanfilippo Syndrome? Some call it a childhood version of Alzhe…
3.6K viewsMar 14, 2024
FacebookTaci Lynn
What is the Prognosis of Sanfilippo Syndrome? | Cure Sanfilippo Foun…
May 21, 2020
curesanfilippofoundation.org
Understanding the Stages of Sanfilippo Syndrome
10.9K viewsOct 28, 2021
TikToksavingsadierae
Sanfilippo Syndrome Diagnosis Update: Sadie's Journey Explained
23.5K viewsJan 30, 2025
TikToksavingsadierae
0:36
Sadie & Fam on TikTok
Jun 16, 2023
TikToksavingsadierae
Donate to Saving Sadie Rae, organized by Jessica Haywood
Oct 6, 2019
gofundme.com
20:02
A parent's impossible choice: saving siblings with rare Sanfilipp…
1M viewsMar 20, 2020
YouTube60 Minutes Australia
0:37
One year ago, we posted our most-viewed video ever. Fifteen million …
795.1K viewsJun 16, 2023
FacebookSaving Sadie Rae: Cure Sanfilippo
17:22
Meet Logan Pacl, a Teen With Sanfilippo Syndrome, aka ‘Childh…
Nov 16, 2023
insideedition.com
3:36
Mom of 7-year-old with 'childhood dementia' shares story to fight for …
1.4M viewsJul 21, 2022
YouTubeGood Morning America
10:10
2006 SCRF Gala Video - The Sanfilippo Family - From Us to You
30.8K viewsApr 22, 2015
YouTubeALifeForElisa
See more videos
Static thumbnail place holder