sanfilipposyndrome hashtag performance

#SanfilippoSyndrome: heartbreaking, rare, genetic, devastating, childhood dementia, terminal, research, hope, advocacy, awareness, families, struggling, support, fundraising, battling, children, mucopolysaccharidosis, MPS, life-limiting.

Watching your child slowly fade away is a pain like no other. Frustrating, depressing, and dishearte

Watching your child slowly fade away is a pain like no other. Frustrating, depressing, and dishearte

Sanfilippo kids often get sick, and pneumonia is the leading cause of passing in their teens. As Sad

Sanfilippo kids often get sick, and pneumonia is the leading cause of passing in their teens. As Sad

Sam is the very best. #sanfilipposyndrome #terminalillness #vent #trach #fyppp #emergencycontact

Sam is the very best. #sanfilipposyndrome #terminalillness #vent #trach #fyppp #emergencycontact

This kid is impossible to buy for because of Sanfilippo syndrome. Our go-to gifts are chewies, adapt

This kid is impossible to buy for because of Sanfilippo syndrome. Our go-to gifts are chewies, adapt

The reality of being a special needs parent is that sometimes we make tough decisions that hurt our

The reality of being a special needs parent is that sometimes we make tough decisions that hurt our

#sanfilippoawareness #sanfilipposyndrome #childhooddementia #memorygame #specialneeds #specialeducat

#sanfilippoawareness #sanfilipposyndrome #childhooddementia #memorygame #specialneeds #specialeducat

We often get asked about Liv’s speech. It’s been incredibly hard watching her words slip away. W

We often get asked about Liv’s speech. It’s been incredibly hard watching her words slip away. W

Trampoline time! Kids with Sanfilippo Syndrome typically love their trampolines, and so do the paren

Trampoline time! Kids with Sanfilippo Syndrome typically love their trampolines, and so do the paren

Liv’s helmet, a breakdown of her head numbers and why we chose to get it. Sharing in case another

Liv’s helmet, a breakdown of her head numbers and why we chose to get it. Sharing in case another

Replying to @규 I get it! Our kids have a lot of the classic features, but it’s not as obvious wh

Replying to @규 I get it! Our kids have a lot of the classic features, but it’s not as obvious wh

#dayinthelife #creators #mom #uniquesigner #signlanguage #sanfilipposyndrome

#dayinthelife #creators #mom #uniquesigner #signlanguage #sanfilipposyndrome

Warning: tears & a tough topic. I’m going to save this for my future self, if we are given an oppo

Warning: tears & a tough topic. I’m going to save this for my future self, if we are given an oppo

Replying to @hey auntie sheren! Explaining childhood Alzheimer’s, and saying thank you for all th

Replying to @hey auntie sheren! Explaining childhood Alzheimer’s, and saying thank you for all th

I promise to be transparent with this rare disease journey. I promise to show you the wins, as well

I promise to be transparent with this rare disease journey. I promise to show you the wins, as well

I mean Lydia thinks I’m funny😎🖤 #sanfilipposyndrome

I mean Lydia thinks I’m funny😎🖤 #sanfilipposyndrome

A little more about me, mom. Liv’s genetic condition causes regression of all skills once learned.

A little more about me, mom. Liv’s genetic condition causes regression of all skills once learned.

Liv has Sanfilippo Syndrome, it’s a terminal genetic disorder that causes progressive brain damage

Liv has Sanfilippo Syndrome, it’s a terminal genetic disorder that causes progressive brain damage

Liv has Sanfilippo Syndrome, it’s a fatal genetic disorder with a life expectancy of 12-20. Liv is

Liv has Sanfilippo Syndrome, it’s a fatal genetic disorder with a life expectancy of 12-20. Liv is

As always, thank you so much to everyone who continues to support us. Today (February 28th) is rare

As always, thank you so much to everyone who continues to support us. Today (February 28th) is rare

Liv has Mucopolysaccharidosis type 3, also known as Sanfilippo Syndrome. A fatal genetic disorder of

Liv has Mucopolysaccharidosis type 3, also known as Sanfilippo Syndrome. A fatal genetic disorder of

We’re so proud of how well Sadie did sitting through a full day of meetings with congressional off

We’re so proud of how well Sadie did sitting through a full day of meetings with congressional off

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