Living with Childhood Dementia (Sanfilippo Syndrome) 

Thankyou for the link!!!🤗❤️🙏🏻

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

Likely because it wasn’t profitable.

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

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.

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

🫶❤️

@@songbirdsystem1465 what do you mean?

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

@@lisardaugherty234 me too.

Punctuation is a good idea here.

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

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

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 💔

@@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! ❤

All adults deserve to live as well

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.

Thank you for all you do.

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

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.

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

she sounds like a wonderful person.

@@friendhaus1858 She is💙🥰

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!

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.

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

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

that stood out to me too, I cried

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

Yes loved this part

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

I'm so sorry for your loss

So sorry

I’m really sorry

Rest in peace, may he have a great afterlife

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.

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.

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

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

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.

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

What is the channel name?

@@carrieanncancino5118 savingsadierae

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!

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

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.

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.

@@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.

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.

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

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

@@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.

@@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.

@@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.

@@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

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

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

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.

@@kimfoster6755 @savingsadierae

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

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

@@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.

@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. 👍🤗🌷

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.

@@unknownhaircolor Definitely! :D

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

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.

@@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!

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

Sigh, same. 😢

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

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.

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

What is her Instagram channel name?

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

@savingsadierae

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

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.

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

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

@@mariemorgan7759 You're welcome.

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

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

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 :(

So is gangliosidosis.

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.

There is no cure

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

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

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

​@@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

he is very sweet.

Chris is an angel, I swear.

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 RU-vid 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 RU-vid 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!

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.

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.

A ghost?...

@@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.

This breaks my heart 💔💔💔

that was sad and beautiful

Yes, I think this channel is very good for kids because it helps them learn about what these people are going through and understand it better. And they likely won't be so mean to people with stuff like this.

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.

What's their instagram??

@@SerpentLipsss@savingsadierae

That's a very good question, where's her dad?

21:40 Sounds like they are separated.

@@radishpineapple74 oh, I wonder why? But I know it's not my business

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.

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

So you know everything about this child & her rare disease by a 20 min vid. Where did you get your degree in childhood development?

I’m no expert on the topic, but I follow them on instagram. She was actually in a trial when she was young that helped, but was deemed too expensive to be worth making. So it held off her decline. But it seems like a lot of them start off developing normally, or at least closer to milestones, then start regressing and losing it by 5.