Living with Childhood Dementia (Sanfilippo Syndrome)
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- Опубліковано 28 вер 2024
- 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 curesanfilippo...
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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!
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.
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❤
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
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.
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
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
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.
Her grandmother has a really sweet singing voice. And it was precious to listen to her help Sadie sing along.
Mimi and Papa look so proud and full of love! Each time she says something, Papa just lights up!! I love that!
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!
4:35 I absolutely love how Chris corrected himself when he realized he was talking over top of her and not to her.
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 UA-cam 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 UA-cam 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!
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.
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.
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::
you can tell there's so much pain theyre dealing with so valiantly.. i teared up watching this.
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.
This breaks my heart 💔💔💔
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.
I remember when YT blocked this channel ( to children? ) or did something because of the fact they show kids on here, and Chris made a video desperately pleading to set it back to the way it was, and I didn't understand why he was so upset and thought, just suck it up dude, but after watching a few of these, I understand now the passion behind the camera and the intentions for telling these stories... all I can say is Chris is doing a righteous thing here, and facing these heartbreaking cases that would crush most of us, and he does it with a smile and gives it his all to bring a little joy to these brave kids and families while spreading awareness. This channel basically encapsulates and demonstrates everything positive that can be done with the tools UA-cam gives us.
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 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 💔💜
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.
Never have I ever seen such an exemptional case of **unconditional love** as this before. ❤️
My heart hurts watching this. Nobody in that family deserves what they're going through and that sweet little girl deserves to live :(
What a lovely family. They are all so loving, supportive and upbeat.
I love Sadie!!! So happy you interviewed her ❤
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.
I'm glad she has so many wonderful people around her to love and support her.
Man this is so sad . These videos make me so grateful for what health I have . Pray these kids live good lives
Oh such a precious little one! ❤️You are all in my prayers!!!!❤️
This child is so beautiful! Bless her and her wonderful family!
I’m glad your family is handling this the way you are, and I’m glad you have such good family support. Sadie will live a good life. I’m sorry it’s so short. Childhood is a magical time in life , and that will be her memories made. Little Sadie I hope your frustrations are limited. May this transition be soft to you. It’s nice to meet you. I’m glad to know you exist.
Such an amazingly supportive and loving family she's surrounded by. Makes all the difference.
TICTOC FAMOUS SADIE!!!!! Oh Sadie is such a delight. Thank you for sharing her with us!!!💙💙💙
I think she threw the tablet because she didn't want to hear about Sanfilippo, especially since she kept saying "my body."
I had heard of Sanfilippo Syndrome but had no idea what it was so first of all thank you for educating me. To sweet Sadie and your loving family, I'm sure you hear "I'm sorry" alot. I'm going to say thank you for providing Sadie with her best life possible. Your love for her and her love for you radiated off my screen 💕
The look of pride and love on Papa's face when Sadie said they build sandcastles 🥺
She is a beautiful child, so bubbly and smart ❤ what a sweet little doll
She really is beautiful.
Thank you for sharing these stories and families, Chris! You’re a literal Angel, for giving these wonderful people a chance to tell us about themselves and to teach us all about the human experience from different perspectives, and different paths. When I watch these I’m just reminded how complex each and everyone is. And it’s amazing. It makes me strive to be a better person everyday, and connect with others. And to spread positive thoughts and words.
Anyways. Thank you SBSK for all you do! And thank you everyone for sharing your stories on here! ❤️
I've been following her story for soo long. I'm glad you got a chance to interview her and her sweet family!
Recently, I've reminded myself to be more present in my personal and professional lives. To be in the here and now. Sometimes being present isn't a personal growth goal or a new years resolution but an absolute necessity when your loved one's time with you is reduced significantly. I'm so grateful I watched this and got to virtually meet this beautiful family.
Prayers for this family. Such people learn to enjoy the simple beauties in life, and learn to treasure them forever. God bless
So much love among this family. Thank you for sharing.
Getting an elderly person’s disease while in the dawn of your existence.
Life is not fair.
I wish so much strength and happiness on this family. They are so courageous.
Sadie is an angel.❤ beautiful video. She has a great family. It's beautiful to watch.
Sadie!!! I’m such a fan of this little girl and her beautiful family! so exciting to see you interviewing them ❤️
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
Sadie having her MiMi sing to her was beautiful. I am glad she has family that cares for her so much and gives her happy moments!
Papa and Mimi are the best. 🎉🎉🎉🎉
So neat to see you on this channel. Hi Sadie and family 👋🏼☀️🥰
Chris i just wanted to say i cant thank you enough for these videos, i was born with a progressive genetic disability myself, (called neurofibromatosis type 1) which inspired me to work with sen children myself however due to nature of my disability a new tumour grow on my temporal lobe causing epilepsy. (around 5 years ago) snice then i was unable to work. now my epilepsy is starting to be under control. even if i cant work full time i want to start volunteering at a sen school. your videos have helped me learn so much about disability's i have never heard of and ive learnt so much. but not that they have inspired me to accept that even i cant work (until my epilepsy gets more under control or if it ever does) i still want to try to do as much as i can to try to get back in that field of work. So thank you not only for the inspiration, but the knowledge of so many disabilities i had never even heard of. so0 thank you not only for the amount ive learnt but mainly the inspiration to start part time work in this field again. even if its for no pay. so again thank you
I'm so happy to see Sadie on your channel! I've been following her on tiktok for a while now. She's precious!
I have followed children with Sanfilippo, and it is heartbreaking to see healthy children become nothing but a shell. I hope a cure is found one day because these children are worth saving.
It's awesome that so much kids Chris meets have so much supportive family members. Family is so important. For the child and for the parents...
I wanna be just like Mimi, the way she views & approaches life is simply beautiful ❤✨
Omigosh when she started singing with Mimi I started to cry....that was so beautiful 😭
I am so thankful for this channel and the way he treats everyone like person. Yes we learn about the issue but he allows us to see the person.
Sadie is loved and in a wonderful environment, and she's awesome.
MiMi and Sadie singing got me, it was so sweet omg
6:00 OMG the grannies singing. i cant
I hope these parents find a lot in this video and see how amazing they are.
Just a few weeks ago I had been looking for an in depth video or interview about childhood dementia but with no luck. THANK YOU SADIE
I also love blue
that aunt is devastated. the eyes say it all.
She adores her Papa…it’s awesome that she has such a large and loving village!
I think her mom should keep affirming her with positive words and keep hope alive 🙏. I hope there is a cure soon or at least much better treatment for these little ones. Sadie is as cute as a button.
I can feel the love from this family 😢❤
I would give my 63 yr old life today if it meant Sadie could experience so much more.
:( she has regressed a lot more since then. She can't really talk like this anymore. I follow several families and it's just so sad to watch them fade away. We need the cure!
That’s a lovely thing to say
I'm convinced Chris was sent here by the Gods such a beautiful soul
Imagine if our elderly with althimerz had so much family support and love?
If their parents were alive!
Chris is a gangster with people!!Where I come from,it’s hard times and struggle,but at least we have a say,some of these kids don’t,and it’s great to see Chris give them a voice!!
I am a life enrichment leader at an assisted living facility, working alongside older folks who live with multiple dementia and comorbidities. I sincerely wish this family nothing but the best. I pray one day we never have to see this disease again.
I'm sure you get fulfillment from doing these videos, but sheesh this has to be emotionally exhausting. Much respect, Chris.
Her little southern accent is so adorable. I wish we didn’t have such devastating ailments like this, it’s so unfair.
Awe they sang Sunshine On My Shoulders. My Daddy sang that as my lullaby as a baby. Thanks for such wonderful memories of my Dad he passed away December 2 2016
she is so cute the little angel I have a daughter with Down Syndrome she is 33 years old I have bad days n good days I thank God she is with me when we go shopping people stare at her especially children she is my baby how old is Sadie u r so cute babe beautiful hair have a nice day dear God bless u n your wonderful parents
"When you forget your fear..." I found that very haunting.
I have taken care of many elders with Alzheimer's and dementia, and it is extremely heartbreaking.
It disturbs me a child can be robbed of their potential in life like this. My heart truly goes out to Sadie.
Sadie is so precious!
WE MUST HUG HER!!!
Edit: They all have Southern accents! I love those!
She's adorable. 💞💕💞💕 I know the powers that be are cradling her and her family are blessed to have their time with her.
She's so precious and BEAUTIFUL
She's just so Beautiful and Look at Sadie's Bright Eyes! She is Awesome. And look at how involved the Grandparents Are! Amazing........ Good Job, Family :)
I've been following sadie's family on other channels for a while now and you can really see her recent decline :( I don't think she will ever forget her favorite auntie Jessi-ta!
Sadie is so smart and amazing sending prayers ❤️❤️❤️❤️❤️❤️🙏🙏🙏🙏🙏🙏
I’ve seen her on instagram. She’s smart, lively, witty and creative.
My thoughts and prayers are you you Chris and your beautiful daughter Sadie and all her extended family. You knows Chris that living from day to day could turn into years to come. Never underestimate the new trials and I pray for One for Sadie. You are all inspirational to us all. Will definitely help financially to find a cure for these wonderful kids.....🙏❤️🇮🇪☘️💐
What a beautiful family thank you all for sharing with all of us.
Punctuation is a good idea here.
What a precious child, truly devastating to know about the disease.
Chris is incredible,..he seems so happy and friendly,charming,.smooth,..tender,..lovely,..i cannot believe,.
The world is so bottled up with bad behaviors and mean people,.that it seems unreal sometimes,when chris us sooo awesome,..
I mean,.it is so fabulous to see behavior like this,.
Look how Papi 's eyes light up when she sings along ❤❤❤❤
My cousin sadly has been recently been diagnosed wit San Filippo syndrome she's slowly losing her speech and it's so hard she was a fun loving babe but now this horrible children's Alzheimer's has completely tooken over her she's still can say I love you. That's all we want to hear is that she still loves us and that she's still here a little
I'm sorry your family is going through this. I wanted to clarify something though, and I'm hoping it's not rude. But, there is a difference between Alzheimer's and dementia. SF is like dementia, not Alzheimer's.
@@autisticzuko2750 the words are interchangeable when it comes to this. It is a version of childhood alzheimer's. It's also a way to get people who don't yet know about this condition to be able to understand exactly what will happen.
I love the grandmas look on her forgetting her fear… beautiful
What you do with these awesome kids is truly amazing man
Im so sorry this is happening to anyone, its very sad and heartbreaking. Ive seen my mother slip away and now my grandmother has dementia, i find it very hard not to greif beforehand, but I try. Their way of thinking inspire me to live here and now, and to save the greif for another day. There is only now. Take care and whoever reads this, I wish light in your way of life.
i follow sadie on social medias! she’s so sweet
Chris is so sweet ❤
20:10 me rompió el corazón esto. Una de sus abuelas dijo que en otro tiempo ella estaría ayudnadolo a grabar. Y cuando ella quiere hacerlo, la tía la detiene. En verdad hay que dejar de pensar como adultos para poder cuidar con paciencia y amor a un infante siendo infante. Que triste que la haya reprimido así
What a sweet angel.
Thank you Chris for all your work. Donated $5
Omg, her Mimi has such a lovely voice (: I would have loved her singing to me before bed
Thank you for sharing Sadie with us. She is absolutely brilliant and beautiful and funny and loving. And she is blessed with her loving family. ❤️ But I bet they feel more blessed that they have her. I am so sorry your precious Sadie has this story and I am so grateful.hownloved she is. All the best wishes for your family's future 🙏 💖⚘️😊💛💙💙💙💙💙💙💙blue hearts for Sadie's favorite color💙💙💙💙💙💙
This is gut wrenching to see this beautiful child deteriorate. It’s not right we spend millions of dollars on thing like sports in this country when there’s diseases like this that need research funding. We have things so wrong in the USA when it comes to health care.
May God bless her✝️🙏
Sadie is adorable! She deserves to live!
This is just heartbreaking. Both my grandparents are diagnosed with dementia. I couldn’t imagine how hard it is for child
Perhaps music she likes because they say it the music is not in the same spot as language and they don’t know why, but music is the last thing , stays even if language is gone. Music makes people happy .Each day is so special. God Bless you all.
God blesses those who bless others and he has blessed you to have Sadie in your life no matter how long you have with her..🥰
I had a friend who was diagnosed with dementia and her aunt said "She's too young to have that" but I think she realized that her daughter did indeed have it