Living with Childhood Dementia (Sanfilippo Syndrome)

Sadie is diagnosed with a form of childhood dementia known as Sanfilippo syndrome. This rare genetic disorder slowly takes away a child’s ability to walk, talk, and eat. Those with Sanfilippo syndrome have a life expectancy of around 15, so Sadie’s family has decided to surround her with unconditional love and create as many positive memories as possible.

SBSK's Socials:

[Kai-ebfv]

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

[stickinug]

Papa is just *beaming* with pride & happiness while Sadie and Mimi sing together 🥰

[kylamarie]

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

[annagitana]

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.

[coco_b]

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❤

[bogboyz]

the look on the grandpa'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.

[Mrkeller]

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

[JC-smmp]

The singing shattered me. My sister at 4, as a baby screaming out songs like let it go was part of the joy of having a baby in the house. You can see her going. It hurts :( my 4 year old sister knew all the words

[catness]

The look Sadie gave her mom when Chris asked about Let it Go was so precious! What a sweet little girl.

[wheelie]

Many years ago I worked alongside a family with 3 little girls who were very much like Sadie and as time passed it was clear to see them losing themselves. The worse bit was the pain the had as the disease progressed and the trouble the family had to get the right services for the girls.
Slowly the girls lost their battle and the parents lost their beautiful family. I’ve often wondered if you would find a family on here kind enough to share their story. So thanks to Chris, Sadie and her family for bringing awareness to this condition.

[jesspalmer]

I love that when Chris asks Sadie’s mom if Sadie likes to make new friends, Sadie responds, so he immediately redirects to ask Sadie that same question. Sometimes when an interviewee is nonverbal, I know Chris will ask the parents more in-depth or personal questions, but I just love that he immediately redirected the question to Sadie. Made me tear up a bit (this channel always makes me cry though).

[Jacoe]

Her grandmother has a really sweet singing voice. And it was precious to listen to her help Sadie sing along.

[CaidicusProductions]

What an absolute gut-punch to learn that something like this even exists.

That out of the way, she may not live for your whole lives, but you'll live for her whole life and the now is all we really have. And you have her for your now, she has you for her now. I feel like someone as joyous and emotionally valuable as Sadie is is a reminder to appreciate what we have now, appreciate just how GOOD life can be to us and that each moment is meant to be treasured, not as an infinite and "taken for granted" amount of time, but as something that MUST be appreciated now, lived for, for today.

What a remarkable family, what an adorable little sweetheart she is. Thank you for sharing this part of your lives with us and letting as all come to know a part of Sadie.

[yaytubeable]

I use to follow Sadie on social media before I decided to uninstall it. I don’t know if this is offensive to say but watching this video broke my heart. A couple months ago Sadie seemed like a fun loving, smart, silly kid. It breaks my heart to see that she has declined so much. I know she is still in there it just hurts knowing that she is losing those abilities to express herself. She’s lucky to have such an amazing family.

[sophmari]

I've been following Sadie and her family for about a year now and my heart is breaking watching this. When I first started following them, Sadie was hyper and excitable and full of words, running around and screaming. The videos that parricularly stick in my head of Sadie at this stage are her playing hide and seek with her family, but because of Sanfilippo, she can't play it "traditionally" and asks for clues or runs out and tells someone where she is. She literally couldn't contain her excitement as she heard someone walk past the room she was hiding in and screamed in delight with this giant smile on her face.
But the past year, you can see through the videos that she has lost so many words and struggles so much more trying to string her words/thoughts together or making the right ones she wants to say come out. This disease is ruthless and nothing about this is fair. I felt so deeply for the family when they told Chris that they wish he could have met her six months ago - This interview would have looked completely different. I might not know Sadie Rae in person nor anyone in their family, but I care for her so deeply and it's so heartbreaking to know that this is her and her family's reality.

[neolithic]

The grandmother and Sadie singing together made me tear up. What a lovely family.

[rosesnow]

When she said the words in the song, the way her papa would smile each time she spoke and looked at them so lovingly throughout 💛 made me feel a bit emotional!

[diane]

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

[micgant]

She is a beautiful child. Her loved ones are doing an incredible job with her and taking care of her. Thanks for being our friend, Sadie!

[khm]

Sadie knows about her illness. At one point during a discussion about it, Sadie kept exclaiming "My body! My body!" While pointing to herself.

The love & appreciation in this family is very inspirational.