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.
Help cure Sanfilippo syndrome at curesanfilippofoundation.org/...
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[@SpecialBooksbySpecialKids]

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 curesanfilippofoundation.org/donate . Every contribution adds up, big or small. Thank you!

[@kathygildea2025]

Thankyou for the link!!!🤗❤️🙏🏻

[@Sammy-il1qf]

Why did they stop the clinical trial she was on, when it was working so well?

[@williamsfamily9631]

Likely because it wasn’t profitable.

[@kiyokochanable]

.So they put up money over the life of somebody.. Damn..

[@kathyk479]

That sounds about right! The man that invented the vaccine for polio gave it away. Gave it to everyone so it could be used world wide! He didn't earn a dime for the vaccine. But somemany people bennified and lived because of that man Wouldn't it be nice if everyone did that.

[@Kai-eb1fv]

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

[@jinxnunya6753]

That also stood out to me too, Chris is really leading by example.

[@PomsNTomsMom92]

🫶❤️

[@yesyes5185]

@@songbirdsystem1465 what do you mean?

[@lisardaugherty234]

I noticed that, too. I have learned so much thru his channel. Wish we had more people like Chris.

[@arnicepernice8656]

@@lisardaugherty234 me too.

[@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❤

[@friendhaus1858]

she sounds like a wonderful person.

[@coco_b]

@@friendhaus1858 She is💙🥰

[@emilybowers245]

That’s amazing! One of my sweetest friend’s son with this is 22! He is struggling so, but his parents are warriors for him!

[@Mrkeller6]

That is amazing she has made it that long and still seems to be going strong. My brother made it to 27 beyond all odds but had almost no higher brain function for several years up to his passing. I'm sure Julia touches every life she is a part of. I know my brother did that in our lives.

[@coco_b]

@@emilybowers245 Yeah Julia has regressed physically so much. Its hard on my sister to take care of her even with the aides

[@kylamarie6036]

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.

[@LynnFingerhut]

I think social media is bringing awareness! Several parents share about it on IG and Tik Tok and hopefully this awareness brings increased research attention!! These families need it, and so do families who have yet to hear about it and how it will affect them in the future.

[@Sam-_-]

Thank you for all you do.

[@sarahkoch-feldman2029]

I lost one of my students to Sanfilippo syndrome aka mucopolysacchairdosis. Wear your purple for MPS awareness in May

[@BeckBeckGo]

My dad’s friend died of Pick’s disease in his 40s. As a kid I thought he was the best. Because he acted so much like a kid. Dementia is a terrible fate for anyone, but particularly for people who are young.

[@jennifers.3818]

Ive been following them on IG for a long time now and this family is amazing. Sadie is beyond loved. She was on a clinical trial that helped her greatly, until she wasnt eligible for tht trial any more and the disease as progressed. Very sad to see knowing theres a trial tht will help

[@yarr0]

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

[@LouxNUH]

love how he turns to the camera and lights up every time she remembers a word and says it🖤🖤 so so sweet

[@shpup]

that stood out to me too, I cried

[@sunmaiden]

I also noticed how proud Papa looked the whole time. 🥹

[@dapeck04]

Yes loved this part

[@LouxNUH]

@@sunmaiden he did, didn't he! as he should be 💜

[@annagitana1]

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.

[@whoschannel394]

Yeah I always thought the same she was really smart for a kid in general till age 5 and I don’t mean to b offensive saying that but yeah it makes her videos harder to watch cause of that her recent regression is heart breaking to watch

[@bubblebuffy]

@@whoschannel394 When did they know that something was wrong? (Sorry if I missed it)

[@bosniakchad]

It's awful that her treatment was just recalled like that,i was following Sadie's mom for a while and i remember how well spoken and advanced Sadie was. I really hope she gets to continue treatment and live a long,healthy and happy life 💔

[@jenniechurch5337]

@@bubblebuffy they found out when she was really young...I think an infant! 😬 It says in the video! I have been following them on IG for like a year! ❤

[@ratratte]

All adults deserve to live as well

[@diane9247]

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.❤

[@bdnugget]

Sadly, research like that also costs billions and decades of work without any guarantee you'll get a working drug onto the market. And if you do, you have to try to make that money back in the few years left until the patent expires. Tropical diseases have the same problem as rare diseases, as they usually happen in poor countries that can't afford the drug. Pharmaceutical companies aren't charities and obviously aren't going to do something that potentially loses them huge amounts of money that could go into other research. Luckily a lot of universities go for the rare and tropical diseases instead with the funds for PhD drug design projects.

[@madelynhernandez7453]

I think they have the cure for all these terrible diseases, at the least they know fully well how to stop it from progressing so fast, but we all know there is no revenue in that. It's a crime against humanity.

[@bdnugget]

@@madelynhernandez7453 nice conspiracy, dummy. If they had a drug for it already, they'd definitely market it for a huge price. Why would they keep it secret? That's just dumb.

[@waffles3629]

Unfortunately no, they aren't ashamed. Given what insulin, epi pens, and even Covid vaccine prices have been doing lately, it's clear these companies value profits over people every single day.

[@John-zr6cv]

Because all they care about is profit. It's truly evil.

[@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.

[@Mrkeller6]

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

[@sleepyote]

I'm so sorry for your loss

[@thekenyanshaderoom2448]

So sorry

[@goofball2228]

I’m really sorry

[@jujuoof174]

Rest in peace, may he have a great afterlife

[@MkUltraViolet]

I hope he had plenty of joy in his life, and that you got to share in that with him.. and that you still find that joy in life today.

[@haleypirio921]

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'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'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.

[@marshmallow7640]

Are you sure it was Sanfilippo and not Huntingtons? Sanfilippo only has a life expectancy of age 10-20 and regression starts at age 6 and below. A teen with Sanfilippo would already be severely deteriorated by that point

[@haleypirio921]

@@marshmallow7640 It was Sansfilippo. That's the word, I remember. He said he was a rare case. He was 16/17 and lived each day expecting it to finally manifest. If my memory serves, he said doctors anticipate him to deteriorate quite quickly due to his age. But I do recall him stressing how truly unusual his case was. He told me this right before he was due for a check-up with doctors. Said he didn't like it mainly due to all the extra people around documenting his case. That and an appointment meant a re-check of Sanfilippo's progression. He said he's expected to live for a few more years but said there are people who've lived past 20. Only hope he had was to be like those cases.

[@marshmallow7640]

@@haleypirio921 Ah ok then, yes he would have to be a extremely rare case indeed. Nevertheless, I hope is somewhere doing well! I can actually relate to him as my genetic testing says I have Kabuki syndrome, but we didn’t even know nor did my doctors. I have to have the most mild form of it possible.

[@AVDB95]

@@marshmallow7640 It might be mosaic, some cells having it and other cells being normal. People who are mosaic for a disease often have better outcomes.

[@megalexander905]

@@marshmallow7640could be mosaic, or not type A like most of the children with it who you see. the other types have slower progression and can be misdiagnosed with autism or similar disorders until adulthood

[@sophmari27]

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.

[@KSMaxiefan01]

It’s so sad I’ve been following her on Facebook since she was baby and her decline in the last couple of years (especially this year) has made me so sad

[@carrieanncancino5118]

What is the channel name?

[@blazwura97]

@@carrieanncancino5118 savingsadierae

[@HamEggsButteredToast]

It's devastating! I first discovered their channel 9 months ago or so and immediately adored Sadie's exuberant personality. Seeing her struggle so much more after such a short time is heartbreaking. But I'm so glad she's touching so many people's lives while she is still here. Sweet girl is making a big impact!

[@whoschannel394]

Yeah I hear you Sadie’s recent videos kill me just like you mentioned like 7 months ago she had so much more words and could have a conversation with you don’t even get me started her videos when she was younger she was so bright and smart for a kid in general I’m just glad she has the family she’s got have you heard of Haydn ? Man that little girl got my heart she got diagnosed late at 5 in my opinion she probaly the most releastic example of sanfilip type a but she like the rest of these precious kids she is also surrounded by a wonderful family

[@lenaChyenne]

I love how caring she is! When Chris gave her a high five and she says "Jessica high five!" It's like she doesn't want her aunty to feel left out and that was so so so so cute

[@jenniechurch5337]

She loves her aunt so much...its so adorable! ❤

[@rasputingrigori8901]

It almost seemed to me like Sadie was trying to hook Chris up with her Aunt, trying to get them to sit next to each other. So cute.

[@AmandaPazos]

@@rasputingrigori8901 Okay, I wasn't the only person thinking this. I definitely got the sense that she was trying to play matchmaker here. She was a lot more engaged, and animated when she was trying to get him to sit next to her, and when he offered a high 5, the first thing she did was tell him to give her aunt one too!

[@jennifers.3818]

​@Amanda Pazos she wanted chris next to her. She wasnt playing matchmaker. Yall need to stopb😂😂

[@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.

[@breannthorne-stanzell5990]

I agree. She has regressed so much since the trial ended. It’s heartbreaking 💔

[@kimfoster6755]

What is her insta? I'd love to follow her story.

[@Ethan-ee8rv]

It’s not offensive at all to find this sad in my opinion. To see a child with a terminal illness decline and lose her abilities to communicate is heartbreaking and unfair. The positive is that she has a supportive family who will stick with her all the way through and comfort her when things are hard, and that she is still happy too.

[@margaritakmp]

@@kimfoster6755 @savingsadierae

[@Cinzia138]

Instead of uninstalling why not support her. It's like ur not interested. Yes it is offensive.

[@wheelie26]

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.

[@sherryd.3425]

We can never know the amount of information that someone is sharing with us. That's true at any age of life. Blue is beautiful. In my mind, purple is very nice too.

[@BeckBeckGo]

That’s… so horrible. I’m so sorry you were part of that tragedy

[@eman6940]

R.I.P.✝️🙏 May they rest in heaven with our lord and savior Jesus Christ✝️🙏

[@jesspalmer9195]

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).

[@anyabar1987]

Because he was interviewing her as if she was non verbal but then pivoting the conversation if Sadie engaged and indicated she was capable of speaking an answer to that particular question.

[@suzannemenuet947]

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.

[@troopertaylor498]

Sadie has definitely changed quickly since I’ve started following them on insta. She was speaking in full sentences and you could understand her. 🥺

[@KSMaxiefan01]

It’s so sad I’ve been following her on Facebook since she was baby and her decline in the last couple of years (especially this year) has made me so sad

[@carrieanncancino5118]

What is her Instagram channel name?

[@carrieanncancino5118]

@@KSMaxiefan01 can you tell me what the channel name is

[@jillsamborsky6417]

@savingsadierae

[@crypticshadows]

@@jillsamborsky6417 that’s even sadder.. there’s not a good chance they will find a cure becayse irs so rare :(

[@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.

[@victorycupcake3061]

Absolutely this. I had no idea this existed. I literally teared up just reading title.

[@CaidicusProductions]

@@victorycupcake3061 Right? I was reluctant to even click on it because I had tears in my eyes, simply for the title. You're spot on. But, as her parents and grandparents have been so wise to do, we shouldn't get fixated on the end result, but more the good of her being here and sharing these moments with us.

[@dixietenbroeck8717]

@caidicus - You, *"caidicus,"* have made "the comment of the century," not just about this child, but also about every person in each of every one of our lives! Thank you so much for the reminder. 👍🤗🌷

[@unknownhaircolor]

I love this perspective. As horrible as it is, she’ll have ALL her grandparents for her “now” and the at the end, she’ll have everyone that loves her still around. Sadie will only know love ❤ they are a wonderful family.

[@CaidicusProductions]

@@unknownhaircolor Definitely! :D

[@bunbun2203]

Just thinking of someone who has such a disease breaks my heart :(

[@imadog3837]

Sigh, same. 😢

[@user-mq5dr1jh5t]

makes me think of my friend's neighbor who had the ''elder'' type. she loved mamma mia. her father used to play it in the shop she helped out at. when we came to see her my friend bought the abba cd for her. ''my father is here! '' she said as she broke out of her dementia stupor and began singing. we still see her today. is in her 70's and her sister has mental digression. sweet souls

[@catness1809]

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

[@Jacoe413]

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

[@nerysghemor5781]

Music is often one of the last things to go. The emotional and therapeutic effects on patients with dementia have been known for a long time…so yeah, while it’s heartbreaking no matter what, I hope she will be surrounded by music to the end. ::hugs::

[@slushied]

i love sadie and her family. i hope one day there’s a cure for this disease.

[@JC-sm4mp]

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

[@JD.78]

Jeezo, i'm devastated that Dementia can affect a child so young, it's heart breaking. My elderly neighbour suffered from Dementia and it was a terrible thing to see someone become a shell of their former self, but seeing this affect a child is...soul destroying. My heart goes out to Sadie and her family. God bless, i wish them well through the tough times to come. Thanks for making these videos and spreading awareness. You're a good Man, keep doing what you're doing.

[@mariemorgan7759]

My late father had dementia towards the last ten years of his life, in his last year (2004) he thought he was talking to people from his past back in the 1940s. It is a horrible disease, and does rob the person of who they once were.

[@JD.78]

@@mariemorgan7759 I'm sorry to this affected your Father in a bad way, it takes a big toll on the family too. God bless.

[@mariemorgan7759]

@@JD.78 Thank you so much for your kind words, Be always blessed!💕🙏

[@JD.78]

@@mariemorgan7759 You're welcome.

[@chokispokis]

Chris, please interview more kids with sanfilippo, they need recognition and help to get a cure 🙏. Years ago Sadie was on a clinical trial and she got a little bit better but the trial got cancelled, it's so unfair

[@Alkid_Sunrize]

There is no cure

[@chokispokis]

@@Alkid_Sunrize that's why they need to find that OR an effective treatment

[@Alkid_Sunrize]

@@chokispokis it will never be possible. not in the nearest future anyway

[@jessfidler2356]

Yes like Logan and Haydn (know that’s spelt wrong)

[@savannahnickel1041]

​@@Alkid_Sunrize I don't think they should give up these trials. Progression was made. Even if it isn't in the near future, why not forge ahead? That is just my opinion

[@neolithic3]

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

[@the_muser7105]

It looks like Sadie is playing matchmaker between Chris and her favourite Auntie🥰

[@rhonamccoll1826]

Totally agree! Was about to comment too. Love how kids operate🤭

[@prettyfarfromOK]

Haha 😂

[@wanderingbob]

Never thought that... she has a cheeky devious side!

[@BeautifulWaterWeaver]

4:35 I absolutely love how Chris corrected himself when he realized he was talking over top of her and not to her.

[@Adrielle.]

he is very sweet.

[@christiangasior4244]

Chris is an angel, I swear.

[@TheKatarinaGiselle]

Yes, and a lot of people either don't recognise when they do that or _do_ realise, but get anxious about it and stop themselves from correcting themselves. But he constantly shows what a humble a connected man he is. We all make mistakes automatically, but when we are truly present (which is hard for the majority of people in today's society because so many ppl are disconnected) it becomes easier to automatically reword what we want to say and how we want to direct it. Chris is an angel- and I believe there are many angels out there that are just isolated and nervous and less confident and don't know how to make their personal gifts become a reality. He is very lucky to have the job that he has, but we need to uplift anybody we meet and encourage them because we have so much space for SO MANY MORE people like him! I feel a lot like Chris, and while I think I am very smart and empathetic, in other ways (especially technology) I am SO LOST! I don't know how to turn my passions of helping others into profit so that I can also take care of myself and my kids. I have so many ideas- I am an idea maker! My brain is constantly coming up with creative, original ideas that could help others- but when it comes to the start up and logistics- I am SO LOST. Not having a support system makes it even harder. I wish I had even one person in my corner of help support me and help me with the things I can't figure out alone. But too many people like me these days just don't have that..and sometimes it's the people that could create the most change! That is heartbreaking for me to think about. I think of ppl like Chris and myself as lightworkers, bringing light to the world. And there are many out there, but so many currently have their own light pretty dim atm. This is why anybody we come across that gives us that feeling of being a person full of light- we must say kind, encouraging words to them. Because we just never know when we might change or even save a life! A currently "lightworkers" I just met and consider to be a friend now is a man by the name of Sam Oropeza who is running for City Counsel (ALL on his own funds because he doesn't want to owe anybody anything, he wants to create REAL CHANGE with the gigantic drug and violence and homeless problems (caused by the drug problem) that is beginning to move closer and even into the suburbs. He has a dream! And I believe and trust him..I just know he is a good man like Chris- and Philadelphia is DESPERATE! More than ever before in history. So is every surrounding suburb. Anyways, if you could, subscribe to his KZbin and follow him on Twitter. Because so far, nobody knows about him and come Feburary 14th, for only 3 weeks he needs to gather 1k signatures in order to continue running! Even if you don't live in or around Philly, the more followers and likes and subs he gains, the more it will help him algorithmically! So please do me a solid, and find Sam Oropeza on KZbin and Twitter (and maybe fb or if, idk yet if he's on those socials) and if you know ANYBODY in or around Philly, spread his name and tell them to do the same! He is a genuine man, and even if I can't succeed myself, I can help create change by helping another person succeed!

[@patk3601]

I knew infants and children could have strokes and can have accelerated aging that causes dementia, but I never realized children could be born with dementia. Sadie and her family are a beautiful reminder of what unconditional love looks like. I can't imagine knowing that your child's life will end prematurely. I hope a cure or treatment to slow progression will be found in Sadie's lifetime.

[@bepowerification]

Chris is such an angel. Its very unlikely but IF something like heaven exists there will be soo many happy kids welcoming him.

[@cookowl]

that was sad and beautiful

[@rosesnow2013]

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!

[@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!

[@imjustsomeguy72]

This is the first one where I just cried all the way through. I've seen and live alongside dementia in adults. I can't imagine what it's like to go through as a child or family of a child. The one bright shining ray of light is that Sadie seems happy. That's the important thing.

[@JustyMe]

Dementia is the worst. Child dementia sounds like a sick joke. I hope some kind of cure will appear soon, my heart breaks for poor Sadie :(

[@esquemaux]

When Mimi 6:15 was singing to Sadie it made me emotional. What a lovely memory to keep forever.

[@Solarskyrim]

I have a 2 year old daughter and I wept through this entire video. Knowing Sadie’s family have to watch their little girl slowly fade away is heartbreaking and I can’t imagine the turmoil that causes inside their psyche. Sadie is a beautiful soul and deserves the world

[@sherryd.3425]

Rhett's Syndrome is equally as heartbreaking. Quality of life is more important than anything. Your kindness and empathy for this child are your gifts to both her and the world. Stay strong. Love is always more important than grief.

[@155chipmunkz]

So is gangliosidosis.

[@hnnpuffnstuff]

Rett Syndrome. As difficult as it can be, a longer life span with less rapid and challenging rate of regression happens for many, many people living with Rett Syndrome.

[@fatimafrione]

A couple of years ago I sent you a message through IG thanking you for creating this page, for sharing stories similar to my sister´s and our family, because it´s a difficult but enriching path. I didn´t mention my sister´s disease because it´s very rare and now here it is, Sanfilippo Syndrome. She lived 45 years, in which we learned so much. It makes me feel less alone. Thank you again ❤

[@idiotsandwich4912]

Wow!!! 45! That’s really amazing! I mean we all wish that they had more time but that’s really amazing that she had 45 years.

[@biggels123]

you can tell there's so much pain theyre dealing with so valiantly.. i teared up watching this.

[@wendyclason8873]

Finding a cure for dementia as a whole is one of my prayers. It's such an unfair disease and even more so for children.

[@shohannie]

She looks so comfortable in herself. She's content with her little family. That's all you ever want for your child.

[@jenniferkelly4263]

I follow several San fillipo kids which is how I find Sadie. You should have made this a double interview bc Sadie is doing extremely well compared to other SF kids because she was lucky enough to participate in a trial that seemed to really slow her decrease down a little bit compared to others 💔💜

[@heatherdplans37]

My second was 26 when she passed away from Sanfilippo syndrome. Sadie is a beautiful young lady and will bless many lives in her years to come❣️❣️❣️

[@sessyloba220]

Mimi and Papa look so proud and full of love! Each time she says something, Papa just lights up!! I love that!

[@Ethan-ee8rv]

I rarely struggle to watch something without crying but this is the exception. “We are seeing this beautiful thing slowly disappear” broke me. I can’t imagine waking up everyday and instead of being excited about your child growing up, being in constant fear as you know she has this terminal disease.

[@steph_90]

This breaks my heart 💔💔💔

[@mollyh9356]

A friend of mine from high school has a child with SF syndrome. She had a son pass away from SF a few years back. Her first two sons both have it (one has passed) because both she and her previous partner carry the gene. She is married to a different man and has a third son who does not have SF. The pain she carries each day is heartbreaking, but she is also one of the strongest people I've ever seen. She will outlive two of her three kids and that's so sad.

[@giulianabarciocco]

It was amazing seeing Sadie with her 4 grandparents. The way they look at her and how they make their best to help her communicate. The purest love

[@alenotario]

She has such a bubbly personality. Thank you Chris for correcting yourself and asking questions direct to her, I’m sure she appreciated that. What makes me sad is that apparently her condition is rare so lab companies won’t invest in research. Imagine how great it would be to save the life of this beautiful child full of personality. If the family reads my comment, I wish you the best on this journey.

[@JiraiyasWife]

Never knew this disease existed, so sad, but she's in great hands. She's got a beautiful family and I pray she has a wonderful and long life from her family and friends.

[@martybob55]

Thank you for sharing your story. Alzheimers disease is a part of my family. I’m sad to say that my sister has recently been diagnosed at the age of 70. I am so happy to see the amount of love that this young child is surrounded by. Sadie is a beautiful reminder that we should do our best to enjoy every moment we have to smell the flowers, bake cookies, pet the animals and sing songs. I was not aware of this childhood syndrome.. thank you Chris for bringing awareness to it. Thank you Sadie, for making us smile.

[@Lucailey]

I know you wrote this 5 months ago and a lot of things can change in 5 months. Marty, I just want you to know that I stumbled on to this video and saw your comment. I hope you and your sister do take the time to do the little things. I worked with people that have Dementia - but I am no expert! Just remember that even when it gets to a point when your sister cant bake the cookies or pet the animals and sing the songs, she still hears everything you say. People tend to shy away from touch but during the end stage of Dementia, touch is so important. She will always know she isn't alone if she can hear you and feel your touch. I hope that God blesses your family and that your sister's Dementia isn't one that quickly progresses. Sometimes people can live for quite a few years still in the very first stages of Dementia and they can still be part of the community and still have so much joy (Actually people can have joy in every stage of Dementia.) Just be there for her. Hold her hand. I'll pray for your whole family.

[@_Skylark]

The look of pride and love on Papa's face when Sadie said they build sandcastles 🥺

[@dalesmth1]

Stumbled across this in my feed, even though I haven’t researched it in years. My stepdaughter was diagnosed with this at about age 6. Within a year, her last words she spoke were ’I love you daddy’. She is now 30, and bedridden.

[@SockenSpiegel]

At what age did she last speak? Do you think she still understands when you talk to her? Where does she need support? If she is bedridden, is there any support from her in everyday situations? I work with disabled people in Germany who have multiple disabilities and I want to broaden my horizons.

[@melykm4051]

To see the end of sanfillipo you need to look at the end of alzheimers. That's where this woman's step daughter is now. There's nothing to be done because it's an orphan disease and almost no research is being funded. Also she was diagnosed at six and one year later said her last words. So she was seven. She wrote it right there.@@SockenSpiegel

[@DeltaDrifter2201]

As someone who has had to handle my own grandfather going through dementia and take care of him along with my grandmother because of family issues that have happened in the past I can say its a terrible thing to see happen to someone. I didn't know their was a syndrome that impacted young children the same way it impacts the elderly. I couldn't imagine how hard it is to cope with the fact that your own child will go down the same route that some elderly people unfortunately go through. At the very least elderly have lived there life and they go through these stages closer to their time of passing after already living for years and experiencing things. Having something like this at a young age just isn't fair at all. It makes me so annoyed and frustrated that the pharmaceutical industry is so focused on making money that they don't do anything to help with something like this if it isn't worth the investment and they aren't getting money for it. I hope Sadie enjoys her life the best she possibly can.

[@aliciaferegrino4586]

Querido Chris: Muchísimas gracias por este vídeo. Muchísimas bendiciones a esta familia tan comprometida con su adorada hija y nieta. Los abuelos son encantadores. Chris, muchísimas gracias porque tengo la opción de ver los vídeos de tu canal en alemán o español. Mi inglés no es muy bueno y creo que subir los vídeos con la opción de leer la traducción en otros idiomas es muy importante para que llegué tu hermoso trabajo a más gente. Espero con mucha emoción más vídeos especiales de personas muy especiales. Con cariño desde Alemania 🥰

[@uyuyuyuya]

me sorprendió un poco leer un comentario en español en este canal 😅

[@FluffyEclairs]

​@@uyuyuyuya I was more surprised to see a comment in Spanish that says love from germany

[@BlueFarmPNW]

My son was just diagnosed with Sanfilippo Syndrome Type A 💜 this past November. He is 5 years old. I have been fighting for a diagnosis his whole life. Please donate to Cure Sanfilippo Foundation. It's up to friends and family to raise money for clinical trials and a chance for a cure.

[@MinhSen11]

The pleasure on Papa's face when she sings and speaks just breaks my heart. Such pure love!

[@deedeeroberts1378]

I cared for a young man with "san fillippo syndrome" for a long long time, he was the light of my life, he lived to 32, and was one of the longest survivors with Muccopolysacaharide Disorder here in the UK, I think about him everyday and always put my xmas tree up on what would be his birthday the 12th of December, i miss him terribly but i know now he lives in the Light xxxx

[@ariel7496]

I started crying when she said "I wish you could have met her 6 months ago." I've been following sweet Sadie and her amazing family for quite a while now, and seeing her continue to struggle more and more is so heartbreaking. I cannot imagine how devastating it is for her family. They are all wonderful and I've learned a lot about life and how to live my life in the best way possible, watching the way they live life with Sadie to the fullest!! Sadie's joy and love for life always brightens my day when I see her on my Instagram feed. Thank you Chris for getting her story out.

[@TheKlaunik]

I usually enjoy SBSK videos no matter of in which conditions the interviewee is. But this is heartbreaking. I can't imagine watch my kid to slowly turn basically into ghost.

[@holly50575]

But, isn’t it fabulous that this family is able to live in the moment for her! So often, families think they have all the time in the world, and it isn’t necessarily true, and we miss out on so much. Kudos to these wonderful people! Love is what we all need, all of the time.

[@Jennifer-gr7hn]

That's pretty harsh and horrible to be so negative and see Sadie as a child who will be become a "ghost." Kindly, if you enjoy these videos "but" this is "heartbreaking?" It's not about you. And this family is inspiring. Likely better people because of the inspiration they received from Sadie. Often times "dis"abilities make us more compassionate, empathetic and while it's hard indeed, I'm sad and afraid that most would terminate/abort if they knew they'd have a child with this...but I think the take home should be, LOVE is laborious and LOVE is why we are here. Love teaches us to not be selfish. Let's learn to also "enjoy" seeing LOVE and be inspired to not want to "pray for an easy life" and be more like these parents, and Chris, etc.

[@prettyfarfromOK]

A ghost?...

[@kaspervestergaard2383]

@@Jennifer-gr7hn Must also be sad for the parents. Imagine seeing all the other normal children and then you get this... He is just realistic. Sad situation for all involved.

[@d34dmagg0tz]

the way the grandpa got so visbly excited when she gave him a kiss on the cheek 🥲 so precious to see a giant loving family to help support her

[@warchiefvr]

My heart hurts watching this. Nobody in that family deserves what they're going through and that sweet little girl deserves to live :(

[@Brycesaggiebabe]

What a heartbreaking condition. She is surrounded by so many wonderful family members to love on her and help her thrive as much as she can. Beautiful family

[@lauragonzalezcarra7832]

Papa and Mimi are the best. 🎉🎉🎉🎉

[@cesia9954]

Sadie is so blessed having people that love her so much 🙏🏽

[@jo.randall]

The way she looked at her mama when Chris mentioned let it go was beautiful ❤️

[@Bretagnething]

This is such a profound mini documentary, not just on Sadie and the love around her, but on grief. How each relative and loved one is processing the information of Sadie's prognosis and the way they gather in love and presence.

[@COZMIC_RAY]

“are you reading for a big important question?! here’s my question!” sadie: “ *uh oh* “ LOL, she’s so cute. and she has a very big personality, even with what she’s going through. she’s an angel

[@lovemeeme14forever]

I’ve been following SavingSadieRae for a year or two now, it breaks my heart seeing how much she’s digressed in the last 6 months like her family said. They all have such beautiful smiles whenever she speaks

[@AnitaJobby]

Never have I ever seen such an exemptional case of **unconditional love** as this before. ❤️

[@khm2128]

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.

[@mapleleaf3803]

My aunt was the first person in a medical book that was diagnosed with San filipo and actually one of the first children that helped doctors to understand the disease. She died when she was twelve years old. In God's hands is now where she rests. Sadie is so sweet and surrounded by an amazing family. 🙏🧡

[@nicolepapole]

This video makes me so heartbroken for the families of kids with SF. I have followed Sadie and several other families and I can't imagine the absolute heartbreak that goes into having a child with SF. I hope one day there will be a cure and help for these families and children.

[@BlueFarmPNW]

I'm blown away with how much speech Sadie has. My son has never had speech that clear. My son has also regressed in what little speech he had. I love Sadie and I love following her story on TikTok.

[@user-my8bb6nc1x]

6:00 OMG the grannies singing. i cant

[@cierahowell8653]

She is so comfortable with Mimi and papa. Clearly she feels stimulated in a safe healthy way: you can see her connection with each of her family members it’s just great she has so much support

[@discobikerAndRosie]

This precious girl is surrounded by love. I can tell shes smart as a whip! My granddaughter just turned 7. It breaks my heart, knowing this young mom has to watch her baby deteriorate. Dementia runs in the adults in my family. It's so hard to watch your loved ones drift away. God bless them. Heavenly Father, wrap them in your love.

[@gabbijainniney]

i am so thankful for the work you do for these kids, chris. you truly are heavensent. thank you for everything you do & how much you support these kids

[@NTGreekGal]

Watching my mom with dementia decline for 6 yrs until her death last year was gut wrenching. She was in her 70's. This takes heartache to another level.

[@lizzyhudson4963]

SADIE!!!! I love her! She seems so sweet!

[@ainsleygibson9196]

I love Sadie!!! So happy you interviewed her ❤

[@glorisol3805]

Seems like she got uncomfortable when her auntie was explaining about her disease, but was very comfortable with Mimi and Papa talking about all her likes and joyful activities and time spent together, the beach, the kitties Simba and Milo, visiting neighbors Bill and Kay...

[@flaviaburns]

Sadie is communicating more AND better with her grandparents. Interesting.

[@Sammy-il1qf]

What a lovely family. They are all so loving, supportive and upbeat.

[@mariemorgan7759]

When I think of all our wasted tax dollars the government puts in frivolous programs, it makes me so mad that a cure for childhood dementia can be found! I am so glad this poor,sweet angel has two caring wonderful parents! My late father had dementia, and this story is very painful for me. I keep her in my prayers!💕🙏

[@NumeroLetter]

I just adore Sadie! I've followed her on IG for a while, and I was so excited to see that you were making a video on her! She's such a little ray of sunshine! Dementia is terrible at any age, but for kids? It just devastates me what these little ones go through. They deserve so much more attention from pharmaceutical companies! Sadie's clinical trial was WORKING, but they pulled it because it wasn't profitable enough for the company, and that's just INFURIATING!! She deserved BETTER!!

[@SerpentLipsss]

What's their instagram??

[@kaitlynnmccubbin2678]

@@SerpentLipsss@savingsadierae

[@punkydudester3]

My sister had this, lived to 24 years old- That late is very uncommon. Usually 17. I won't explain being her slightly older brother was, I was tormented. I can't believe my parents lived through it.

[@nondescriptbeing5944]

I’m sorry, what a devastating situation…he posted a new video with another girl with this, and it was very saddening to see how it impacted the family.

[@AmeliaEarhart537]

That's so sad 😢 One person in the comments said that their relative lived to be 45.

[@CLMarshal57]

5:44 ok, im sobbing. John Denver always made me cry, hearing her sing this song and letting Sadie finish the words is just heartbreaking. Mom is doing so well, holding it together. Sunshine on my Shoulders takes on another meeting when she sings it

[@pinkelemental9517]

How this little one is loved - it's just emanating from all of the family in this video. Her village is so, so nurturing and I am so glad to see this sweet girl surrounded with so much love.

[@Blasfamous8]

Love how this little Angel just loves Chris and kept asking for him to sit with her. Heartwarming and heartbreaking. I hope something good comes to these people.

[@BNHAalltheway]

Sadie is a great little girl and has a great family that loves her very much I hope that someday there is a cure

[@christinanieto9119]

Chris is an Amazing Person! What he is doing is meant for Everyone to see and learn from. He is an Angel walking among us all. The world needs more people like him. I love watching all the beautiful people he interviews are purest of the pure. 10000000% AMAZING

[@sleepyote]

I'm glad she has so many wonderful people around her to love and support her.

[@marinaS3456]

Poor Sadie! It looks like she understands and process much more than she can verbalize. Feel so sorry for her!

[@tnov4212]

I went to the foundation link and made a donation. I forgot to put in their site comment section that it was because i saw your video. But I wanted you to know that I had never heard of this disease and I thank you for making me aware . You are making a difference.

[@uselogic117]

Papa was so happy when he got his shuggg. I love the southern ❤️ thank you for spreading light on such an obscure topic.

[@averyshenandoah1637]

That grandpa made me smile and cry at the same time! Just wow at how she got the word right! I’ll never understand

[@serenawiththelonglastname9468]

I've been following this family for a while now, I love Sadie. She's such a kind soul, i really hope they're able to get more funding for clinical trials and things of that nature.

[@kitten7835]

I really really hope that she's okay

[@newchapterasmr]

What a sweet girl, i’m glad she has such a great family who focuses on the little joys

[@TheRunningLeopard]

Honestly, at 18:32 it sounds like Sadie is saying. "Help. Help. My body. My-my body helps me. I'm in my body. My body! Tell them my body." I think she understands more of what is going on than her family thinks.