Living with Childhood Dementia (Sanfilippo Syndrome)

Comments · 1.4K

• SP

  @SpecialBooksbySpecialKids · 3 years ago · pinned

  Since Sanfilippo is rare, pharmaceutical companies are not willing to invest to find a cure because it is not profitable. This means that most of the funding for research must come from individuals and nonprofits. You can help find a cure for Sanfilippo at <a href="https://curesanfilippofoundation.org/donate">https://curesanfilippofoundation.org/donate</a> . Every contribution adds up, big or small. Thank you!

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• KA

  @Kai-eb1fv · 3 years ago

  I like how chris corrected himself from “does Sadie like making friends” to asking her “do you like making friends”— not ignoring someone with difficulty communicating is the bare minimum, but so few people do it that I still get so happy whenever I see Chris being so kind

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• EM

  @emmapariera5210 · 1 year ago

  Today is Sadie’s 9th birthday. She’s doing amazing for a kid with Sanfilippo! She’s been given an amazing, loving life. Best wishes to her and her family and prayers for many more birthdays to come ❤️🙏🏼❤️

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• KY

  @kylamarie6036 · 3 years ago

  As a pediatric nurse, I think Sanfilippo deserves this recognition. It&apos;s a horrible disease and widely unknown, but this was both an honest and lovely video. I&apos;m so sorry that Sadie has this diagnosis, but it looks like she is surrounded by so much love.

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• ST

  @stickibug · 3 years ago (edited)

  Papa is just <b>beaming</b> with pride &amp; happiness while Sadie and Mimi sing together 🥰

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• CO

  @CoCo_b_Trappn · 3 years ago (edited)

  My niece Julia is one of the oldest people living with this. She just turned 25❤ My sister started Julia’s Hope out of KC. It amazes me Sadie can say words. Julia had a couple words up to about 18months then regressed and hasn’t spoken since. She is so so tall, like a volleyball player and is almost completely immobile now. She is nearly wheelchair bound. She is a beautiful singer. She always is humming❤

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• AN

  @annagitana1 · 3 years ago

  I wish people could see how advanced this child was when she was a toddler. Brilliant. Super advanced. (I saw all this on social media). And she did very well in a clinical trial that the pharma company halted. It seems like the disease progression was halted quite a bit. I can’t recall how long she’s been out of the trial but it’s cruel and wrong that she can’t get the medicine. She’s worth it. All these kids are worth it. They deserve to live.

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• DI

  @diane9247 · 3 years ago (edited)

  How tragic it is that the mega-profit pharmaceutical companies don&apos;t continue &quot;unprofitable&quot; trials for little ones like Sadie. How are they not ashamed? Shocking. Love to this family.❤

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• BO

  @bogboyz · 3 years ago

  the look on the grandpa&apos;s face when she remembered their cats name honestly made my eyes water. it never really crossed my mind that something like dementia could affect kids but its heartbreaking. thank you for letting people get their stories out there, you can tell its all love here and thats awesome.

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• MR

  @Mrkeller6 · 3 years ago

  This illness took my brother. Thank you so much for posting this and bringing heartfelt awareness to such a trying disease.

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• SU

  @suzannemenuet947 · 3 years ago

  I grew up with a set of twins that had this disease. The girl died at 15, but her brother, who we all expected to go first, lived to 22.

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• WE

  @WearableSpaghet · 3 years ago

  Right before the pandemic, I meet a teenager who was taking the same college class as me. The last time we met, he disclosed that he had Sanfilippo Syndrome. That dementia hadn&apos;t begun yet, but doctors anticipated it to be only a few months for onset. He was such a kind and intelligent young man. Very funny and creative. I can&apos;t even fathom the terror and anxiety of knowing it was only an approaching matter of time before you mentally deteriorate. The frustration, fear, and helplessness. There are not many things worse than watching as you lose a loved one this way.

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