A Child with Dementia and her Loving Sister
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- Опубликовано: 22 май 2024
- Help cure Sanfilippo syndrome at CureSFF.org/SpecialBooks
Belle is diagnosed with a form of childhood dementia known as Sanfilippo syndrome. As a result her life expectancy is in the teens and she is slowly losing cognitive and physical abilities. Belle's sister, Arden, was confused why they could no longer play together on the playground. But now that she understands the reality of Sanfilippo syndrome, Arden just hopes Belle knows that she is "loved more than sugar pie".
Anybody who would like to contribute to finding a cure for Sanfilippo syndrome can do so at CureSFF.org/SpecialBooks. Every dollar donated goes straight to Cure Sanfilippo Foundation. Since Sanfilippo syndrome is a rare disease, the primary way to fund research is through individual contributions. If everybody reading this donates just $5, our community will fund life-saving research. Thank you for your kindness! We donated the first $1,000 in honor of Belle and the many others we have met impacted by Sanfilippo syndrome.
Y'all should interview Logan and his mother too!
I'm wondering how her diagnosis was determined... I have worked with Autism dual diagnosis people and I can say without a doubt she absolutely has every marker for Autism... I personally, would want to revisit the diagnosis.
@brendawood5526 This disease has genetic markers that are unmistakable. Shr is dying due to a buildup of heparan sulfate and without a cure to remove that buildup, then over time your cells are rendered more and more useless.
@brenda before I rage look up how genetist test for this disease. It often is only diagnosed as autism which can hinder they getting the therapies and meds to help slow the decline
Donation done ✅
Arden is obviously a great kid, but I hope she knows she's allowed to be angry/upset/frustrated, sometimes
yes, I agree with you.
Yes. As a former glass child myself… I worry for her. I hope her parents set aside time for her to be a kid and to be herself. I hope she isn’t parentified too much. I hope they are proud of her for being herself, not just because she’s a Sib.
Yes thanks for pointing this out. It's giving parentified daughter who learned that her problems will never matter as much as her sisters and she gets positive attention when she's a good, caring girl. I hope maybe we're getting this vibe because they're on camera and the interview is indeed about her sister... but I think the reason we feel this way is because we often recognize that this is the reality for "glass children"
i’m sure Arden, will grow up to be a very caring woman because of having Belle in her life❤ I do hope Arden gets special time with mum & dad too… Blessings to you all xx
So, yeah
No child should have to anticipate their sibling's death. I hope Arden's getting as much support and care as Belle is; this is heartbreaking.
My cousin went through this. We knew his younger sister would pass away young from just about the time she was born. It started off as a life expectancy of about 8 and increased through the years, she passed when she was 17. It's not easy knowing that. He's doing well now, but it was very difficult for him.
Highly doubtful. Rarely do parents of a terminal or disabled child give enough focus and attention onto their other children.
10:45 the mom mentions her not knowing the reality of the disease and wanting her to have hope
@@RepentandbelieveinJesusChrist_I Hope she gets love and attention, as well as Belle of course. I can’t imagine how much pain I’d be in to see my sister fade away, I just hope she is okay
She's surely getting that. I have a child that's like that and this interview concentrates in her sister. She's is still a child, but a very mature one, and there's nothing wrong with a girl like that. My child grew up to be an amazing doctor with the same clear compassionate soul.
Arden is going to be absolutely crushed when Belle passes. I feel like she’s holding in ALL of her actual feelings. Poor sweet girl!
She absolutely will but I also wonder if it will bring her peace when it comes to prioritizing herself/her family/life bc I bet Arden would feel guilty for ever putting anyone else before her sister, including herself. So although it will absolutely crush her, she will also not have to feel guilty about eventually living her own life and I think having that sense of freedom will be good for arden one day.
i think growing up with that happening its almost natural that she's holding it in as its helping her survive the situation. i do hope the family has her working with a therapist or counselor to try to process it all
I hope her parents have her in therapy already
@@pocasanchez the issue is she needs to learn to not feel guilty for living her own life. And right now would be the best time for her parents to teach her that but they arnt.
She will feel crushed and guilty that she gets to live on.
And all those repressed emotions if not dealt with will come out in a toxic way and probably as anger towards her parents and their grief for her sister as she's their living child and all the attention went to Belle.
They she was "just a kid", they should have known she was hurting(and they should), they are her parents and should have cared for her, etc etc
I know it sounds harsh but it happens very often when kids are made to deal with adult issues including sick siblings . They seem fine and mature but once they get older you see the damage it actually did.
Bc these parents don't stop to think that shes a child not an adult- so however it appears she is dealing with it may not be 100% true nor really being processed correctly as it's hard enough for an adult with a fully formed brain to comprehend and cope with. Let alone a child who feels the burden to care for her sibling and not add to their parents concerns.
If these parents don't start separating time for Adren and having her have real life normal kid experiences without her sister it won't be good. Same with if they don't start to address how she's actually feeling.. not what it seems. But her actual thoughts and feelings. And show her truly that they are the rocks for both Belle and her and that's it's not her duty to care for her sister but to be her friend.
She shouldn’t have to spend her childhood as a caretaker
I've worked intimately with autistic kids, schizophrenic patients, family members with Alzheimer's, dementia, Parkinson's, and people on life support. Here's one thing I've learned: They can hear you. And they know when you are talking about them. She may not completely understand but you can hear Bella 'yelling' because she understands they are focusing on her. Emotionally, most people are still the same person on the inside no matter their issues. Both my parents had neurological diseases in the end and couldn't speak. If we spoke about them in front of them, they made it known that they could hear us!
100%. When Belle was vocalizing and her sister responded, she smiled because it was a real genuine interaction between sisters. The specific words often don't matter, but the expression of love matters deeply.
So 👍 true
I agree. My mother had Alzheimers and in some ways she was far more 'sensitive' to other peoples moods when she was ill than when she wasn't. I would often get frustrated with her but no matter how hard i tried to hide it, she'd always know and react accordingly. She never missed anything going on around her, even at her illnesses most advanced period.
So well said! I admit I never thought about this in these kinds of terms, but it seems very natural that dulling or loss of some faculties leads to sharpening of others (as is often observed in the case of blindness or deafness), so as some cognitive capacities weaken, others will try to compensate, until finally only heightened emotions (both expressive and receptive aspects) remain. I'm personally very much into art and classical music, and I suspect these phenomena are all related: heightened emotional perceptions and expressions, with some cognitive faculties overpowering others, even crowding them out altogether.
@@epis8613 Exactly! I've worked professionally in the industry for over 30 years in music, film, and tv. But the best response I got at the end of my mother's life was singing simple lullaby songs. She loved baby and puppy videos too. And when they hit you, they are usually just trying to get your attention. 🤣
Arden is a top tier sister. I hope the parents recognize this as well. I hope they set aside time for her to be herself, for her to have a bit of one on one attention without her being a Sib, and for her to feel her feelings and not feel guilty about having whatever feelings she happens to have.
Belle is amazing as well. They are both beautiful.
It's the first time a parent has said the quiet bit about using the 'healthy' sibling as a third parent.
Arden needs support and attention and affirmation too. What an incredible kid.
Absolutely. This kind of reminds me of Young Sheldon, where one child is special, and his siblings feel like the world resolves around him.
@@miapdx503Why? This video is ABOUT Belle’s life. She’s a happy girl and this commentary is truly unhinged, don’t speculate or judge. OP as well.
I just hope Arden knows that she doesn't have to be positive & sunny all the time. I hope she is allowed to express her pain too. 😢 The fact that their mother openly admits to parentifying Arden is concerning.
hard agree, she's still a child deserving of care not an adult.
No she didn’t, all she said is that she helps out-that doesn’t mean she’s not allowed to be a kid or has to dedicate her whole life to Belle or anything. There’s nothing wrong with letting a child help their sibling in age appropriate ways, especially if they want to. It probably helps her feel a sense of control. There’s a big difference between letting her do things like figure out which Mother’s Day activity her sister prefers or help their mom find her shoes and say, watching her unattended, changing her, doing her feeds, etc (the ladder of which would obviously be inappropriate.) And just because the parents chose to focus on all the things she does well during the interview doesn’t mean they don’t understand when she gets frustrated with Belle and needs space or one on one attention.
She looked like she was trying to force looking happy quite a bit. I saw her turning her head away a few times like she was trying to hide her face and hold back showing her sad feelings on her face.
Yeah sounds like she is coached.
What’s wrong with you guys?
You can tell Arden's such an amazing sister and person. She seems sweet, smart and caring. While I hope they will get to have Belle as long as possible and she doesn't suffer horribly when her time comes, I also hope Arden gets to live a happy life and sadness won't follow her like a shadow. Oh, how I wish there was a cure for horrible diseases and syndromes like these.
Why does she keep saying so yeah
Is that all you can contribute, ffs?
@@littleoopaloompaIt's very normal for people to develop filler speech, things they say that don't add to the meaning but give them something to say while they collect their thoughts. A really common example is "um." Public speakers are coached to avoid these and learn to just pause quietly if they need a little time to form their next thought. I recently heard one public speaker confess that he will look pointedly out at the audience to drive home his last point, but also to disguise the fact that he's collecting his thoughts for his next point.
@@RepentandbelieveinJesusChrist_you are not annoying at all, and your user name is powerful. You changed me 🙄
You forgot (or did not know) about the stage between now and the death, which is pure agression. Parents will had to pick, strap her to the bed or let her run freely.
I feel so sorry for Arden. I hope she gets a chance to realize who she is and make a life for herself. I also hope the parents realize they actually have 2 kids, not just 1 (Bell). Arden deserves a childhood and parental love. It's not her job to be the third parent and nurse.
I came to comment this
It just seems like a sister relationship to me. I think the video is just focused on Belle rather than completely on Arden because it is to raise awareness about the condition. We can’t get all the intel from just one video. I’m sure Arden is just as loved as Belle is, even if it means they don’t celebrate half birthdays for her. Usually when children don’t get enough attention they act out and that behavior isn’t really shown in the video but I’m sure she has her moments too.
@@jjamesgames6573It is common for people with a sibling who has a disability to feel/be left out. I think Arden is holding in her emotions because she knows she has to be strong and helpful for her sisters sake.
Same. Like she clearly loves her sister, but she's still a kid and deserves to get to be a kid.
Why wouldn’t they ‘realize’? What a heartless, assuming comment
My grandpa died of Alzheimer's. It hurt watching him forget us. Call me his brother's name. I can't imagine watching your child deteriorating like that. 💓
So sorry for your loss my mom currently has it 😢😢
I'm so sorry for your loss. May he rest in peace. God bless. ✝🧡
My father had dementia for the last decade of his life. I'm so sorry your family is facing this too.
My dad passed from Alzheimer’s it was brutal and it makes me ache for this child and her family
Sorry to hear that ❤
It broke my heart when the father said that his father has Alzheimer’s as well. They talk about the “sandwich” generation, when you’re caring for both your parents and your children, but he’s experiencing that tenfold. I’m so sorry that they’re all going through this.
Anticipatory grief is awful. My wife has health issues that are likely to take her young. I constantly think about the day thats going to happen. Its a constant feeling of dread. I also wake up startled out of my sleep to check on her multiple times a night. If you arent careful it can really take ahold of you and you'll stop taking care of yourself. When her health thing first happened i wasn't eating, drinking, showering, or taking any alone time. I didn't want to leave her side because i thought i might loose her. Shes out of immediate danger but she is still at risk and so in a sense im still that way. I have gotten a little better at taking care of myself though. If youre going through this make sure you also care for yourself. You can not effectively care for your loved one if you arent healthy.
No words except I’m so sorry you & your wife are going through this. I sincerely hope you will seek help to guide you through this. Deepest sincere sympathy.
@@user-mi9wg2gq7c appreciate it. We'll definitely get through it. just have to learn to relax and enjoy the moment.
My mum had terminal cancer and I spent 3 years feeling like that. Its only looking back you realise how much it grips you.
I hope the best for you and your wife. Thank you for sharing your experience.
Enjoy the beauty of what is left, or the grief will even steal that from you. I wish you and your wife a very happy life together.
Arden talking about how she often wishes her sister doesn't have this condition is obviously how all of Belle's family must be feeling, but it just broke my heart to hear her say she hasn't seen any shooting stars. I just can't imagine how painful it'd be to see your sibling deteriorate like this so young. It's wonderful how supportive and loving she is with her though, I think they're both incredibly lucky to have each other
around the 12:30 mark it's so clear arden cares so much for her sister even when she isn't speaking! she grabs the necklace belle's trying to chew on and brings it up to her mouth for her, then immediately after, straightens belle's dress out. this is incredibly heartbreaking for this family, i wish them all the best and i pray cures for degenerative brain diseases like these are one day found. 😪💔
Yes. Arden is so precious ❤
💕💕💕
Arden has been raised with empathy and is able to demonstrate the same. What a beautiful family. May they have all of God’s blessings
I haven’t finished the video yet, but I really hope Arden is in therapy. If she doesn’t learn ways to deal with this in a healthy manner early on, she could develop self-destructive tendencies. Plus, it’s best to treat trauma when it’s still recent.
She's at a very high risk of anorexia nervosa in the coming years, if nothing else.
So agree ❤
I hope the parents are doing the right thing and have Arden in therapy now and will continue that after she passes.
Anticipatory grief, what a horrible thing that must be.
I'm glad Belle was born into a family of loving caring people, especially her sister, Arden. 💜
I didn't know that was a thing, but I recently experienced that with my grandmother.
I live in the middle of no where so I see shooting stars quite often, I will use my wishes for Arden and her wishes for her sister. What a wonderful sister, you can tell Belle is the most happy with Arden.
Pray and believe in Jesus! He is the true miracle worker ! ❤
@@lamblyywhy would he let this happen in the first place?
I hope Arden gets some one-on-one attention. It is hard having a younger sibling, because your parents attention is divided and that’s an adjustment. More so when your sibling is sick. Prayers for this family. ❤
I have four younger siblings. Those kids are my whole world.
I hope Arden isn’t smiling on the outside and raging on the inside, something seems forced about it but maybe she was just nervous
She's old enough to understand that the video will be viewed by thousands of people. Most people wouldn't be comfortable with showing their rawest emotions in public. It's ok that she's being selective with what she shares with the whole entire internet.
She probably feels bad thinking about her sister dying…
@lovemeeme, I agree with you. I saw a crack in her public face during the grandmother's interview.
I helped my dad caregive mom with early dementia when I was in my early 20s. It was a long 22years before mom passed away... In those years, I smiled outwardly to the outside world. Inside - it was a totally different thing. My younger sister one time said to me: You smile but your eyes are sad...
Judging solely on this video it seems she has an amazing support system with caring parents. Im not necessarily a religious man but i will be praying for this family
@@karend1577 ❤
Celebrating half birthdays so that you can cherish every moment you get with Belle, is beautiful! I am so sorry that she, and the family, must endure this terrible disease.
You can tell the mom is strong but broken. Like a cracked vase that can still hold water
Seeing Arden choke back tears broke my heart.
The bond between those two sisters is absolutely amazing!!
What's really the saddest thing is Arden is young with her sister now but as time passes and she reaches adulthood her sister's condition is gonna get worse. And it's gonna be critical for her parents to provide equal if not more love and support to her as they do Belle.
I hope they are also encouraging her now not just to be the amazing mature sibling but just a child. To have activities and friends outside the home etc.
Many times these children repress their emotions and desires and I hope the parents recognize that and do things to prevent that from happening. Like letting her really know no matter how sick her sibling is it's ok for her to be upset or sad or mad/frustrated and that it's not a burden to them.
Just like she doesn't need to feel guilty for the experiences she will have that her sister won't.
And above all that she is her SISTER her friend. Not Belle's mother. That's a burden she doesn't need to carry and doesn't change how much she loves her.
I've rarely said this about other dynamics with other kids and their sick siblings on this channel but something about how the girl talks about her relationship with her sister and how everyone else talks about her and their relationship. I just feel like her maturity and understanding is being overly concentrated on and valued over the fact she IS a little girl. She is also their daughter. She's not as grown as she looks when compared to Belle, but she needs just as much love attention and care as her sister does just in different ways!
I'd pin this comment if I could. First time here feelings this concerned for a sibling as well.
Arden’s reactions to Belle’s vocalizations are so loving. Grandma seemed to be a bit irritated by them (and please don’t think I am judging her in a bad way, I’m not at all; the whole family seems very loving and sweet), but Arden smiles and uses similar sounds to talk to her sister. It is so heartwarming to see that love and bond between them!
Coming from someone that deals with this daily I can say her frustration is most likely not at Belle but an anxious reaction. My son doesn't have sanfillipo but he is autistic with intellectual delays n he is very LOUD n screams, makes noises n has public meltdowns often. I myself get very frustrated when he does it around strangers or in public but Im not frustrated with him but more so at the fact that I have to trigger him even more by trying to calm him down instead like at home when I can just let him be until it passes. It sends my anxiety skyrocketing bc idk how others are going to react. You wouldn't believe how MEAN n judgemental ppl can be in these situations especially since my son looks 100% like a "normal" child. So they just assume he's a brat r I'm a horrible mother n make faces n even comments! I've gotten into many verbal altercations over him in public defending him. So when he goes off so to speak I'm frantically doing everything to quickly deescalate the situation n pacify him without triggering him further which sometimes is impossible lol. Im sure it looks like frustration towards him to strangers when I'm doing this but I guarantee its not. If anything I'm frustrated FOR him bc he can't convey what's causing him to meltdown! Not sure that's what was happening here but just thought I'd give my 2 cents from experience 😊 hope that all made sense lol
I didn't notice the grandmother being irritated by the girl at all. I did see her struggling with the emotional weight of answering the questions though
@LeeLeeCRN As someone who has autism themselves, I'd just like to say that it sounds like you're doing a great job with raising him. Don't feel embarrassed when he gets overwhelmed because there's only so much you can do. I was the same way as a child, and my mom struggled to make sense of how to help me (because it took a VERY long time to get an official diagnosis so I just seemed like an unruly child). But now as an adult I know when I'm overwhelmed (or can even feel it coming on) and know how best to handle it; it's a learning process, but it's worth all the struggles in the end.
@LeeLeeCRN I'm neurodivergent with an autistic sibling, social outings can be harder. But I've learnt that anything that they do isn't personal to me. Sometimes I'm trying to hide my emotions and then get overwhelmed triggering sibling to get upset and walk off. We have two other siblings too, so it can be quite hectic and causes people to be judgemental and stare. But they are just ignorant and I've learned they aren't worth thinking about. But anyone else that has struggles or are neurodivergent I'm sure they aren't going to be judging you and will be sympathetic. In the UK we have sunflower lanyards that we can wear to show we have hidden disabilities. Maybe you can get something similar for him so you don't feel so stressed by strangers reaction in that situation. Either way you sound like an amazing mum and you are giving him a great life ❤
Arden has a heart made of gold.
Its so cute how Arden finishes her answers with "so yeah!" with a big smile 😢 I can't imagine trying to prepare for losing ur child or sister. I hope the whole family gets as much support as possible and that Belle lives the most fulfilling life possible. ❤
It seems forced. I worry for her. And the matching outfits and things are a bit odd. It is gonna be harder on the sister than it has to be.
@b1k2q34 I see what ur saying. It is gonna be very hard for her. Its just an all around sad situation. I just wish them all the best 😞
@@b1k2q34I don't think the matching outfits are odd at all. I think it's cute. When my two older brothers were little my mom used to dress them the same and they hated it. My nephews Zachary and Ethan loved to dressed the same when they were little. Now a days they dress differently more often. They're 15 and 10 now.
I don't see it as very cute, it actually reminds me of the way people (kids in particular, since I mostly work with kids) find to take weight off what they say because they don't feel it's important or worthy of being heard.
My heart goes out to that girl and her family, but I sympathize with her in particular because I believe she deserves to be loved and cared for just as any other kid (and I have no doubt- however understandable others may find it-that she's not getting the attention she really deserves).
@@b1k2q34 though ofc it seems odd to us, let's remember that this mother is mourning in anticipation of her daughters death. she had to see how her two girls we're such close friends, and go to where they are now. their mom may be doing some things a little oddly, but she is holding onto something we can't even comprehend. it's never fair to judge from a 20 minute video, especially about something like this. living and coping with this type of situation is impossible to "do right", and if putting her daughters in matching dresses helps her there is absolutely nothing we can say. she is doing her best, weather that's perfect or not.
I have a strong feeling that the parents depend on Arden way too much.. they stated how much help she was.. I do think she needs some special time for herself from her parents
It’s so fascinating to me that all kids with Sanfillipo syndrome look like they could be siblings. They’re beautiful kids.
Yeah the bushy eyebrows are a super noticable characteristic, along with other features. Super interesting how people with certain conditions will have shared visual characteristics. Waardenburg syndrome and down syndrome also come to mind!
Facial phenotypes are fascinating!
I didn't realize there were physical characteristics until today. When I saw Belle, I thought, "Oh, I think SBSK did a video about her before." But that was another little girl with Sanfilippo who looks similar.
@@jennyn5692I thought the same at first.
@@lilwaffleiron7845 William's syndrome folks have very similar features and characteristics which I find fascinating in regards to the nature/nurture behavioral debates.
My son Gabe is 8 with Sanfilippo type A, .. His little brother doesn't have it. Dalton is 7 so he still is pretty confused, and we're having behavioral problems because he's just trying to figure it out. Which is understandable. Arden is doing such a great job. There's groups online for families and support. If they don't know. I did share this.
But I'm praying for this family!!
I have written you guys about Gabe before
san filipo has some of the most tragic symptoms of any disease i’ve heard of, both mentally and physically. i can’t imagine picking myself up every day in the face of such a terrible reality but it’s good to know we all may have the capacity for such strength. arden seems like a wonderful person. so intelligent and compassionate, and her smile is absolutely radiant.
Gosh Arden is already shaping up to be such a genuine and kind human being. Belle isn’t missing out on anything with the family she has. I send all the love and support in the world to your wonderful family. ❤
Very well said. Thank you❤❤❤❤
Biology is so crazy. The older sister is so articulate and it's probably a gift from God to help her sister communicate. I also appreciate the family expressing their grief and not pretending that everything is sunshine and roses. God bless.
I pray Arden is in therapy. She deeply needs it 🙏🙏❤️❤️
The parentification is strong with this one. 😬
I don't think singling Arden out would be productive. Mom, Dad, and Arden need counseling as a family unit--without Belle present to yell everyone down. Of course that's not intentional, and she can't control it, but it is distracting and constantly takes the focus off Arden and anyone else who's present. Then Arden can admit her true feelings about her own role in the family and get what she needs as an individual.
@@5Gburn Arden needs her own specific counseling away from her parents. To be told she can and should live like a KID. I guarantee you she will resent her parents as she grows and is possibly not being encouraged to be her own identity - not just "the sister of the sick child". She needs to be a child with child responsibilities - school and chores. Not caregiving for a terminally I'll child albeit her beloved sissy. No offense to Mom and Dad - they are amazing.
Poor kid.. The parents are messing her up big time
My niece just turned 26. Sanfilippo was supposed to take her by age 15, on average. She is so tall and is a grown woman living like a toddler. My sister’s life is nothing like it used to be. This is such a rare disease. It is bittersweet seeing so many other kiddos with this. Thank you for posting this. Thinking of all these precious children, (and adults), living with this every single day.
@coco_b I am happy to hear that she bypassed the teenage years. It's wonderful she's still here. I'm sure she warms your hearts in ways even if she may be non verbal
@@Baroness666 She is the best. Thank you for your kind words. She is mostly immobile and has gone almost completely blind. She is so strong that she could overpower my sister and just run, many times into danger, but now she just stands and has to be led and physically moved into different positions. I just learned her last birthday that she is blind💔 She really is such a beautiful person and the entire family is so grateful for her.
My second cousin was 26 when she passed from Sanfilippo. It has been a few years now.
@@heatherdplans37 Wow. Sending hugs to you and your family. I can only imagine the rollercoaster of emotions from that💔😢🥹💔
Wow bless her heart. Thanks for sharing your nieces story. God bless and help all those with this disease and genetic diseases.
I have a very rare disease that there is also no cure for. Loin pain Humeteria syndrome.(LPHS) I completely understand what this family is talking about concerning the lack of research and funding. There are about 700 people world wide with LPHS so there isn’t a huge push to look for a cure and do clinical trials as so few people are my disease is very painful and it’s easy to get discouraged and depressed. I admire this families attitude and that they still have hope
Wishing you the best, Cindy.
💗🩷💜
I’m so sorry. Never heard of it myself and I’ve been into health my entire life.
You could be interviewed by this channel if you felt comfortable sharing your story.
Exactly! My son has HS, a glandular disorder that has very little research and no treatments or cure
@@carynmartin6053I have this too, it can be distressing but I manage a very full and happy life. I hope the same for your son.
This older daughter is the sweetest most empathetic loving sister to her younger sister. I'd have loved to have had a wonderful sister like her, so understanding with unconditionally love
Even as a bereaved parent myself, I can not begin to imagine this family's pain. The anticipatory grief, wow, that hit me like a ton of bricks. Not only did it remind me of my own initial grief, but of friends who've lost partners, and a dear friend who's son also has a very rare life limiting disease. For as beautiful as this family is, it hurts my heart at how cruel life can be
I'm very sorry for your loss ❤
Awwwww. It's tough being the sibling of someone who has a disability. Hopefully she has some alone time with parents and gets out of the house and has her own things to do
Arden the older sister has a lot of pressure on her, I’m sure the adults realise this & make sure Arden has her own time!
My heart breaks for this family! The father's father having alzheimers and his daughter having dementia is like a double whammy. I couldn't even fathom the feelings of loss associated with the fading of these two lights simultaneously. 😢
The bond between the two sisters is amazing!!! Such a sweet family!!!
in middle school and high school i was a peer tutor for ALE (Assisted Learning Environment) classes and one of my friends there had sanfilippo and whenever i got to hang out with her she was always so happy. im sure that belle will be happy for as long as she wants, i hope they have a great time with her always.
Arden is going to be a very compassionate loving person . Therapy is going to be very useful in the future to help healing.
I feel bad for both the parents, but the father going through both a father with Alzheimer's and a daughter wirh San Filippo syndrome..that has to be great weight on him and his mother. Truly heartbreaking. Arden is an amazing older sister and I hope she has the help she needs because it must be so much for her to process, knowing she will lose her sister one day.
Wow, how aware and loving her sister is.
The love and compassion Arden shows for everyone around her is awe inspiring. There is so much hurt in the world, yet here is this little girl who has devoted herself unconditionally to loving and caring for her sister. ❤
Awww You can see her big sister mourns that her sister won’t be able to have the same life experiences that she’ll get. ❤
Bless those little angels.
She is an ANGEL! Both of your children are adorable. May the Lord Bless them always. Mom and Dad, you guys have beautiful children.
The sister is so sweet, you can really tell how much she cares about bell ❤
Yeah..... Belle 🎉 I love to hear you yell - go for it .
Just because it's not normal in our society to yell out loud with joy, I cheer for Belle being able to do that in an unrestrained way - we could learn a lot from your lovely daughter 😊
What a beautiful family so loving. Arden is a fabulous big sister😊
Greetings from
Janice 👵 🇬🇧 xxx
Hi there Belle! Hi Arden! Hi Mom and Dad! Belle, i love your little red bow it’s super adorable 🤩 Arden, you are a superlative sister (If you don’t know what superlative means, ask your parents as i’m sure they know-after all it takes superlative parenting to raise such compassionate, kind daughters)
Arden , like any sibling you’ve interviewed, is a special kind of human. No kid should have to go through this, and to see the siblings who help out, is a magical and wonderful thing.❤😊 I LOVE her smile!
Her older sister is obviously a very caring person. She’s going to be a very kind person as she grows and s great mother someday
Oui une super maman
IF she wants kids, and IF she’s not tired of taking care of people.
@@Ceerads Of course
@@ExplosionMare People saying, “She’ll be a great mother,” etc., is an assumption that shouldn’t be made, especially these days, when fewer women than before are choosing to have kids. Somehow, no one says a similar thing of boys, how wonderful a father he’ll be. I’m not nit-picking, but it’s annoying to hear those kinds of things.
@@Ceerads I completely agree with you
"So yeah."
The parentification the sister is experiencing is heartbreaking. All her true feelings summed up, and lost, in that one phrase in which she ends each statement: "So yeah."
We literally all know "So yeah" means "In this family I'm not allowed to be sad, angry, or negative about how my sister's disease rules everything in our lives. My sister's needs come before mine, so no point in finishing my real thoughts and emotions, as no one listens. In this family I must smile and say all's great. So yeah."
In no way am I blaming anyone. With this situation, I would think the roles each members play are almost inevitable due to the very nature of the thing. Probably impossible for any of them to bust out of this fate. Truly, its more like a family disease, rather than just the young child.
it could be a nervous reaction. im sorry but you are assuming too much. what shes feeling and thinking you dont know we dont know
you're looking way too far into it. It's a "filler".. like umm and like.
You're right
My dad died from lewy body dementia and I had pre-grieved so much that my coworkers were confused by my apparent lack of grief when he finally passed. It did and does still hit sometimes but I went to work the day after he died and was relatively ok, which isn't normal.
She’s such a good big sister
An example of how many families show great compassion, empathy and love to a family member who has a disability. 💜💜💜
Prayers for the family
My friend’s daughter has this disease. It was difficult seeing her at 2 years old physically active, lively, and a joyful to now being on a bed 24/7 😕. Her mom is amazing she’s been taking good care of her making beautiful memories with her and giving her a life as normal as possible. She just celebrated her quinceañera not too long ago.
I appreciate you making this video because there needs to be more awareness about this disease for families to at least know how to prepare for what’s coming and to hopefully one day finding a cure 🙏🏼
I'll be praying for Belle, Arden, and her parents to have a miracle. This is absolutely heartbreaking. Arden you are a wonderful sister !
Arden…what a wonderful sister you are, sweet girl.
Arden is such an amazing girl, and a wonderful sister. Children like Belle remind us that a life isn’t something that should go by a certain set of rules, or things that make it complete, like dating, marriage, jobs, etc. A life is about the moments, and appreciating that it’s all so brief for all of us. Sometimes we waste too much of life focusing on things that don’t matter and waste it on things that mean nothing, like acquiring things or competing.
Her sister is so sweet. I notice the siblings in these videos are always so kind❤
My dog just died from cancer and I quit my job to spend what limited time I had with him. I know this is different but Waker was literally my child. To be told that he has cancer on a day he was just getting a normal checkup completely crushed me! I can relate to the mom on the anticipatory anxiety because just knowing “that day” was coming sent me into a deep and dark depression. But I had to get out of it to spend time with him. Moral of the story, we have such LITTLE time with our loved ones. Take each day God gives us as the biggest gift! And pray and hope (just like the mom said). There is NOTHING that God can’t do and he can give ANY miracle!!
Arden is so mature and loves her sister so much, I hope she has an amazing life starting now and for her future as well❤️
My God!!! I'm immensely impressed with how kind and caring the parents are! They are dealing with such a heartbreaking situation yet they are trusting and quietly hopeful. I think they are amazing parents and their children are absolutely beautiful. Their daughters love and concern for Belle is a prime example of how great these parents are. God bless all of them!! ❤
They absolutely are. I grew up with Katie, the mother and was roommates with her in college. I knew her husband, Jamie as well. Really great people. It's heartbreaking this is happening to their child.
How lucky that a child like Belle ended up with a sister like Arden and vice versa. Both such special girls who are so perfect for each other. For Belle to have a sister who is so understanding and appreciative of her condition, and for Arden to have a sister who she sees so much beauty in. ♥️
Such sweet kids. Arden, Belle is so fortunate to have a loving and strong sister.
It's unfortunate Belle has this horrible disease, but on the bright side she has an amazing family.
What an adoring caring sister. She is amazing. Also an amazing family. Great interview Chris. Thank you for the link and chance to donate.
Arden is precious!! She's going to be a wonderful person!
The love that sisters have for each other is just incredible
I had anticipatory grief, but wasn’t aware that it had a label! I have done this twice, with the last time being my 14 yr old dog Belle Belle. I’m more emotional in the mornings naturally, and I would give her morning “ Momma love” and get in my head like ya said, and wonder how I was going to do life without her. I asked my friend Sheryl what to do about it, and she said…STOP IT! 😂 She added: Do you want Belle Belle to spend her last days worried about YOU? Wondering why Momma gets upset all the time? That perspective truly helped me to stop it, at least in front of her. Thank you for sharing that! And thank you for sharing your family story. Your oldest daughter is such a wonderful young lady! Both are beautiful, but her empathic level is far beyond her age. You and your husband have both done an amazing job raising your girls. ♥️
Such a lovely family. I wish you all as much meaningful time together as possible.
FEeling so sorry for Arden....She does not seem to get seen in this so sad situation. Looks like she is suppressing all sad feelings- always smiling- taking the role of the one who has to smile for the entire family. I hope she gets all the support she needs ....
I sure do admire her mother.
Bravo, sweet Arden for taking care and loving your precious beautiful sister and to the amazing parents and grandparents. ❤
What a lovely family. This story was moving. It deeply saddens me that conditions like this exist. That's a very large umbrella. What brings me back, to a degree, is seeing people treating others with kindness and love. Thank you so much for sharing. All the best.
im not sure why so many people are bodly assuming that Ardern has no childhood, you saw a 25 minute video focused on Belle, you have no idea what Ardern's or that family's life is really like and what things Ardern's family might do for her individually.
The sister is so cute taking care of her little sis,fixing her dress to make sure nothing is exposed. "so yeah"😊
Anticipatory grief is so hard, it's like a very, very, long goodbye. My service dog had degenerative myelopathy, a canine ALS, I cried every day and when the end came, I still wasn't prepared for the actual letting go. I know these two cases are different, it's the anticipatory grief that is the same.
This one was a tear jerker for sure. SFS needs research and a cure!
Big Sister is simply Amazing!!!! I love the way she cares about her sister!
Arden has a kind, sweet and beautiful soul. She's a really good sister.
Angels family here. Arden is something special. Highly positive.
Thank you for sharing this video, I send love, healing and positive vibes. I wish the best for all of you :)
❤❤❤
What 2 cute little girls. Wish you the best life you can have.
God bless them girls.
Arden is a delightful child. I really pray for her emotional strength to get through this.
Arden is so strong and wonderful, i hope she has a beautiful life.
My grandma had severe dementia and it was horrible watching her decline. I honestly have never heard of this disease, and it makes me sad that this little girl has to go through this. Her sister Arden is absolutely great, though! Such a nice young lady and she's so happy to be a big sister 🙂
Pray for a cure...
What a beautiful family...
May God grant them patience and understanding...
They're both so precious. Big sis, make sure to be a kid every day, so you can be there for your little sis. You are awesome for taking such good care of her! My granddaughter is 8 & she's my best pal. The girls are best pals too. I can see that. Make lots of memories! Praying for you all!
I hope Arden gets half birthday celebrations too.
I know why they do it for Belle. But Arden is still young enough that she may not fully understand why if shes not celebrated the same way
What a great child Arden is.
what a sweet sincere family.... Arden is an angel to her sister Belle.
God bless this family!❤
5:45 I’m crying while praying for that whole family, particularly the grandmother and son who are also “losing” someone else to a type of dementia. Lord, carry them through this and surround them with loving, supportive, discerning, and caring people! 😢🙏✝️