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Facial Features of Sanfilippo Syndrome: Children with Sanfilippo Syndrome often display some common facial features. These facial features also progress (or coarsen) as the child grows older. Frontal Bossing • An unusually promiment forehead, sometimes with a with a heavier-than-normal brow ridge. Prominent, Thick Eyebrows • The eyebrows are typically larger in size than average and have more abundant hair. As the child ages, the eyebrows thicken further and may converge. Full Lips & Nose • Typi

Facial Features of Sanfilippo Syndrome: Children with Sanfilipp…

4.8K views8 months ago

FacebookHaidyn Fowler

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

Sanfilippo Syndrome is genetically inherited from both parents. Child…

69.2K viewsJan 3, 2023

FacebookCarrie & Haidyn Fowler

Sanfilippo Syndrome is genetically inherited. Children grow seemingly healthy and hitting most milestones within the first few years of life but as the syndrome progresses they begin to lose it all and need 24/7 supervision and care with everything, like a newborn baby. Cognitively, Haidyn is around the age of a 9-12 month old. While she can no longer talk she does still understand some things we say daily like: food, hungry, drink, sit down, I love you, arms above your head (when changing cloth

Sanfilippo Syndrome is genetically inherited. Children grow seemingl…

2.6K views8 months ago

FacebookHaidyn Fowler

What Is Sanfilippo Syndrome? •Imagine Alzheimer’s and dementia, but in children. •In a nutshell, that’s what every family of children with Sanfilippo Syndrome faces. •Sanfilippo Syndrome — also known as Mucopolysaccharidosis type III or MPS III — is a terminal, neurodegenerative rare disease. It causes children to lose all the skills they’ve gained, suffer seizures and movement disorders, experience pain and suffering, and then die, often before the second decade of life. •Because of its neurode

What Is Sanfilippo Syndrome? •Imagine Alzheimer’s and dementi…

36.5K views5 months ago

FacebookHaidyn Fowler

Disability Pride Month 🌈 What Is Sanfilippo Syndrome? Imagine Alzheimer’s and dementia, but in children. In a nutshell, that’s what every family of children with Sanfilippo Syndrome faces. Sanfilippo Syndrome — also known as Mucopolysaccharidosis type III or MPS III — is a terminal, neurodegenerative rare disease. It causes children to lose all the skills they’ve gained, suffer seizures and movement disorders, experience pain and suffering, and then die, often before the second decade of life.

Disability Pride Month 🌈 What Is Sanfilippo Syndrome? Imagine Al…

2K views9 months ago

FacebookHaidyn Fowler

Sanfilippo syndrome causes, types, symptoms, diagnosis & treatment

Sanfilippo syndrome causes, types, symptoms, diagnosis & treatment

Sanfilippo Syndrome: A Fight Against Time To Save Sadie

Sanfilippo Syndrome: A Fight Against Time To Save Sadie

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A peek inside life with Sanfilippo. @Abby's Alliance - Battling Sanfili…

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Around 80-90% of kids with Sanfilippo Syndrome have sleep i…

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Muskego family seeks Sanfilippo syndrome cure

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What is Sanfilippo Syndrome? Michigan family shares their journey

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Sanfilippo Children's Foundation: Our story so far...

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Shining a Light on Sanfilippo Syndrome & Save Connor Campai…

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Meet Logan Pacl, a Teen With Sanfilippo Syndrome, aka ‘Childh…

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What is Sanfilippo Syndrome | Cure Sanfilippo Foundation

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What is the Prognosis of Sanfilippo Syndrome? | Cure Sanfilippo Fou…

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