Mom of 7-year-old with 'childhood dementia' shares story to fight for a cure l GMA
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- Опубліковано 20 лип 2022
- Haidyn was born with Sanfilippo syndrome, a rare genetic disorder that causes her to lose her ability to talk, walk and eat.
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#GMA #Dementia #Children - Розваги
She looks so much like my Trenton who also had Sanfilippo syndrome . He passed away at 9 years old in 2018 . Still praying for a cure or treatment . Wishing you and your family so much love and light ! You are not alone 💜💜💜
I’m so sorry, dear.
@ jentra I'm sorry for your loss and my thoughts and prayers are with you and sweet young Hayden and her family❣🙏🙏🙏
What an amazing person you are, having suffered such a loss, and still spreading love 😍
God bless you. So sorry for your loss. 💖 🙏🕊️💐
I’m so sorry. That’s terrible. I’m glad you’re praying for a cure because, I’m praying with you. God bless you and your family. ❤️❤️❤️
I had a student with Sanfilippo and it was so difficult to watch her regress. It really was like she had dementia. She was the most amazing person and I am So thankful that she was brought into my life. When she died, I was forever changed. I wish Hayden and her family all the best and hope
They are able to enjoy their time together.
Mom & dad are exploiting her on social media for their own fame and money, it's disgusting. The fact that I recognized that girls face right away, is absolutely shameful. Every kid deserves privacy. Every kid. Even if their parents don't think they deserve it.
@@JB-ln2nx do you really have to jump the gun and call it abuse? Everyone posts normal family vlogs on their social media and why cant they?
And because of this "abuse" i and millions of people just learned about a terminal disease that plagues innocent children and could possibly make a change for the better.
@@kornani657 well said
Wait, the student couldn't remember things and was sent to school anyway? Looking into this disorder, the kids have a short life span, it's really messed up that they reached dementia level and forced to go to school.
@@queenieburgers50 Most SF children go to school to try and retain the few skills they have for as long as possible, such as walking, eating etc and therapies.
One of my students (6th grade) last year has Sanfilippo, I keep her in my thoughts every single day. My students shared stories about her when she talked, ran, and played with them still. They love her and think of her as a classmate who they love.
She is very lucky to have a teacher like you and friends who care. It's good that she isn't bullied
That’s so cool! It’s nice to hear a comment like yours. She was lucky 🍀 to have a teacher like you and awesome classmates. God Bless you.
I think kids nowadays are a gift; they're so much more understanding and willing to others with special needs. My baby brother made such an effort with a girl in his class with autism that 5 years after she saw him, this little girl who barely spoke, saw me at a pedestrian stop and named my full name and asked how he was and was grinning ear to ear, saying she missed me. I almost cried as she'd never seen me before, she just knew so clearly knew his face. I can't think of any more of an example the effort has to made, as kindess carries those who are forced to struggle.
This comment is encouraging me today. My 9 year old daughter has childhood dementia. I hope her friends and teachers will too remember her spunky days full of joy jokes and affection, as she is quieting and slowing down. Thank you for a bit of hope!
@@mspaint93calling them a gift kinda treats them like objects though..
My brother has this. I'm glad more awareness is being brought to the condition. My brother is a lot older than me. It's heartbreaking to hear my mother talk about how many words he used to have and how many of the things he used to be able to do be lost. Even now I can see him regressing. Childhood dementia is such an accurate nickname for it.
Not even a teen yet and im worried im gonna lose my speech and ability to properly move and use my arms and body parts. The thought makes me anxious😢
@@thebluerebellion This is an extremely rare genetic condition. You don't have to worry about it.
My mother is suffering from dementia and seeing how this just swooped over her is very hard. But to see a young child like this is heartbreaking even more. My brother would say this about my mom “why her? She never did drugs she never drank or anything.” It sucks n best wishes to this family.
My grandmother going through the same thing she doesn’t know who we are anymore its genetic and generally skips a generation so my father who is 60 now likely wont get it but me and my sister much more likely me because i already have a disorder that effects my long term memory i just hope MAiD is fully established at that point so i can have myself put down before i lose the ability to consent if i make it that far and lupus doesn’t kill me first . But this little girl 😔 this isn’t fair she should have had an entire life ahead of her i feel so bad for her mom and dad 💔
@@neurodivergentpixi6736
Look, I agree with you that coconut oil is not going to cure this girl of her genetic disorder. However, your assertion (as it appears to be) that oil is only a waste is incorrect. There is a difference between saturated and unsaturated fats. Fats (many in the form of oils) are actually ESSENTIAL. Without them, our bodies could not properly absorb and use important fat-soluble vitamins. (Like, D, E, K and A) I’m going to quote other benefits I’ve found…
“Fat also helps with nerve impulse transmission, regulates cholesterol levels, and can help improve our memory storage ability. All diets need to include a certain amount of fat for organ protection, insulation, energy storage and inflammation control.”
Your reasoning doesn’t make sense either, in that we secrete oil as a waste, but take in water. We also secrete water in the form of sweat, mucous, bowel elimination and through urinating. So the waste aspect does not bolster this argument.
I’m not trying to be confrontational or anything. I simply don’t want people to casually read this and believe oils are to be avoided completely. Moderation and the right form, as with most things. Balance.
Despite there being no overt cure for a myriad of ailments, it is true that nutrition and the avoidance of toxins can improve health significantly. SOME autoimmune disease symptoms, for instance, can be reversed through using the autoimmune protocol diet. I have a sister who totally reversed her severe lupus symptoms using that method. The foods she still avoids are dairy and gluten, and I think maybe corn and soy as well. If anyone does a bit of research, they will find a plethora of those it has helped. It is about eliminating common triggers, then entering things back in one at a time to see how your own body reacts to each, to know what foods cause each individual health issues or pain.
I have type 1 diabetes and Hashimoto’s thyroiditis, both autoimmune diseases. The first is obviously not one that will have elimination of associated symptoms, as the body has attacked the pancreas’ insulin production ability, but eating better and exercising certainly can help lessen daily insulin needs and keep blood glucose levels more stable, causing less likelihood of organ, eye and nerve damage.
Proper diet may not cure everything yet, but I do think the answers are out there for many ails and based in either adding or eliminating certain foods (perhaps in concentrated forms and specific combinations) and toxins in the environment. The problem is, “big pharma” can’t profit from what is readily available and not able to be patented, and who else will have the resources to fund the studies needed to discover what might work for many?
My oldest daughter also has type 1 diabetes. And although we live in a time where the disease can be managed, it is still something that can kill us without enough insulin. All it would take is a supply chain issue. Probably one or two weeks without insulin, a very miserable month at the most and we would die. When we have had an issue with our insulin pump, like a kink or the catheter pulling out just enough without obviously detaching, we get very sick with hours, less than half a day. Fortunately, we can recover within hours once getting a a new “set” attached to resume insulin flow.
My point is, I am grateful that we have general good health with insulin, (and me with the addition of thyroid and blood pressure meds) but we of course hope for a cure one day, so we don’t have to rely on expensive maintenance and a smoothly functioning economy to stay alive. My heart goes out to anyone suffering or watching loved ones who suffer from any disease, disorder or ailment.
I hope we very soon come to discover enough about the human body that we can treat or reverse most or all such things. Perhaps a pipe dream, but all things start from a thought or a wish before they become a reality. So we must first dream and ponder before the action and fruition of concepts can manifest.
Would it have been easier to accept if she did drink or had done drugs? If not, why mention it at all?
I can relate. Mom just passed from dementia last month. Broke my heart when she was staring right at me asking where I was….. can’t even imagine a kid having it…Take care..
yeh, my mom too, she is only 67
My heart goes out to this family what a brave little girl she’s absolutely beautiful
Mom & dad are exploiting her on social media for their own fame and money, it's disgusting. The fact that I recognized that girls face right away, is absolutely shameful. Every kid deserves privacy. Every kid. Even if their parents don't think they deserve it.
Sending them all the love ❤️ i cannot imagine what they’re going through as a family.
@@JB-ln2nx - I can see your pov, but I can also see this being used for good. They explain at 2:05. People can donate and also learn about an unknown disease. The more we learn about it, the more attention it gets for medical science.
She got no clue what's going on
@@gloriadesouza4625 - Wrong person? I said nothing negative! She’s beautiful and God bless them. Look again. Whatever you’re mad about, it wasn’t me!
Absolutely heartbreaking. My dad got alzheimers when he was 54, to this day I still think alzheimers and other dementia disorders are the absolute worst diagnosis you can get. When he stopped recognizing and talking to us I remember breaking down and crying to my mom, saying I almost wished he got cancer instead so I could atleast talk with him. Watching him deteriorate was the most painful thing for me.
The doctors told us that the earlier you get it the quicker it progresses, and he passed away from it less than 5 years later. I can’t imagine a kid having to go through what he did, you can’t even explain it to a child that young.
While yes from an outside perspective it is likely the worst diagnosis, I’d assume it’s not such a bad way to go, losing all memories so everything is kinda present and new, you hold no grudges, you don’t remember any pain, you’re like a vegetable, or someone sleeping while at the same time awake
Theres more to it than losing memories. You hallucinate, you lose the ability to poop or pee by yourself, you cant shower by yourself, you forget who you are. You cant recognize anything and nobody understands your needs because you dont even understand whats happening.
“We’re doing this so kids in the future don’t go through what we are going through” what a heart of gold💛
Precious little Haidyn was born into the most loving and caring family. I have a lot of respect for how this family is dealing with this and how they advocate and love and find joy and cheer Haidyn on. She is most certainly so beautiful and loving and she is so very loved. How wonderful that you all have each other.
They are an amazing family! Some of the best folks I’ve ever met! And little Haidyn! I feel a deep love for her yet haven’t ever had the pleasure of meeting her. She brings such light to my heart when I see her beautiful little face.
I’d do anything to help this poor baby and her family 💚
Mom & dad are exploiting her on social media for their own fame and money, it's disgusting. The fact that I recognized that girls face right away, is absolutely shameful. Every kid deserves privacy. Every kid. Even if their parents don't think they deserve it.
@@JB-ln2nx They are trying to promote awareness.they are trying to make Thier child's world a happy one.Disgusting that you would denigrate such loving parents.Get off your media high horse.
@@JB-ln2nx So she doesn't deserve to have her story told because she is this sick? This is how people get to donate and fight for rarer diseases. This is these families only chance to get at the least a conversation going.
There is no cure and nobody is studying for one. That is why these parents do this. There are many different types of neurodegenerative diseases in children that are hardly looked at because most people don't know they exist.
@@JB-ln2nx Haidyn is not being exploited. Only Haidyn’s mum runs the social media and she gains absolutely nothing from it, she makes no money from the tiktok fund, never does brand deals and doesn’t ask for donations for anything. Haidyn’s mum cares nothing about fame or internet clout, she’s a full time carer for her child who is slowly degenerating infront of her and loosing more of herself every day and seeing her suffer, the ONLY reasons Haidyn’s mum post these videos is for awareness about a little known rare genetic disease and to keep the memories she has of her. Haidyn’s mum treats Haidyn with dignity, she never posts videos of any of Haidyn’s less dignified moments like crying, screaming, choking, throwing up, falling, seizures, any accidents etc.
I don't normally comment but I just have to. This child is absolutely beautiful. For 10 years I watched a little girl named Livia Grace who had this horrible disease. Her parents Kelly and Jake found out 2 weeks after having her baby sister. I was so blessed to be able to see and be with her through the good years and the rough times. Sadly she lost her battle at 10 years old. God bless her amazing parents I honestly don't know how they managed to hold themselves up daily.
Cherish every single day with your beautiful amazing daughter. Our Livi never got a miracle cure but I'll be praying that they discover one soon.
You watched her for 10 Years? Do you realize how utterly creepy and inappropriate that is?
Mom & dad are exploiting her on social media for their own fame and money, it's disgusting. The fact that I recognized that girls face right away, is absolutely shameful. Every kid deserves privacy. Every kid. Even if their parents don't think they deserve it.
@@JB-ln2nx I took “watched” to mean she was her nanny or babysitter 🤷🏼♀️
@@jennifergraceh Yes you would be right. I worked in child care.
@@JB-ln2nx were you abandon as a Child? You sound so bitter Or has your husband cheated on you? You seem miserable with life. Go eat a cupcake, or have some s€x
@@JB-ln2nx how does your foot taste? I hope it tastes awful....much like your soul
Tears are rolling down my cheeks as I'm writing this post I'm heartbroken to see her fading away She's so lucky to have parents like you who are doing their best to make her happy.
My cousin had that. My family knows what it's like. I hope the heavens give you the strength you need to see the beauty in every single things your daughter does because those are memories that will always be with you and your family. Enjoy every day.
I've been working with dementia patients for over 15 years this breaks my heart to see somebody so young go through this😡😔
Hats off to you, my ex had ALS along with FTD and ALS alone was bad enough but to throw the dementia aspect in was so hard to watch. Hard for our daughters to have watched their dad fade away day by day. He lost his battle on 6/28 but is in a way better place than he was
@@crystallongson8565 I'm sorry you all had too go through that💔
Thanks, I’m sure hard for you too every day to watch families have to suffer with this
@@crystallongson8565 It's very hard i just had a patient die on me the other day.. I was thinking about doing something different because it takes a toll on you mentally watching people go through hell and you can't do a damn thing about it but make them feel loved and as comfortable as possible it sucks
@@crystallongson8565 I don't think I could take care of baby going through that I would be a nervous wreck
Such a beautiful beautiful little sweetie pie. Look at those stunning eyes. I love how Mom And Dad are fighting for more, to share awareness and teach us all. Brave to allow the world in on this journey. We could all be so lucky. Sending love. God bless.
Tschandra
May Tripal Gem Bless her and her family.
Mom & dad are exploiting her on social media for their own fame and money, it's disgusting. The fact that I recognized that girls face right away, is absolutely shameful. Every kid deserves privacy. Every kid. Even if their parents don't think they deserve it.
@@JB-ln2nx It is not exploiting they not asking for money nun they are educating for a cure so they won't lose they child stop exploiting for attention because they could lose they child that's why they doing it.
@@JB-ln2nx So sorry about your loss. I pray that you receive every blessing. 🌸
@@JB-ln2nx are you gonna comment this on EVERY COMMENT?! Give it a break. You lose. Stop!
My husband works in genetic research, I immediately shared this video to him. I really hope someone can find or create a cure/treatment for these unfair genetic disorders that take such strong and amazing souls :( I'm sure haidyns parents are providing the best life for her possible, but its so sad to see beautiful families torn apart for reasons they can't control
@Peanut know what? 🤨
@@user-jb1mb5xh9t about this diese im asuming
@Peanut he might not know about this child
ua-cam.com/video/QBHZoLvTTEQ/v-deo.html
@Peanut ua-cam.com/video/QBHZoLvTTEQ/v-deo.html
I can’t stop crying. I just can’t imagine what the family, especially Hayden is going through. I hope that every day you have together is special and I also hope that your fight for a cure comes through. She is a beautiful soul. Thank you for sharing your story. ♥️♥️♥️
I teared up quite a lot myself at this little ladies story. Take courage when you feel that down, it is certainly what I would hand to you if I could, but I hope words will do. When we feel the weight of the world it may help to know one another is beside us to help lift it back up. Best of luck friend.
I feel like crying too.
I’ve just watched this again and see that poor little Haidyn was diagnosed in March 2020....just as the world was going into lockdown. What a cruel twist of fate that this poor family gets their worst possible news at the worst possible time. You wouldn’t imagine a nightmare could get any worse, would you? So very impressed by the love and care they give to their beautiful girl and the strength they show in sharing their struggles. Thoughts and prayers are with you all ❤️
Maybe a bit of a blessing as well to get to spend more time with her, more than they normally would have had.
@@nunyabizness9594 Good point. I hadn’t thought of that, but hope that was the case for them.
@@nunyabizness9594 i doubt more time would help them even if a blessing would do anything (which is subject to opinions)with diseases that destroy the brain the longer it goes on the worse it gets
@@gingerguinea-pigfromoneoft6394 I can’t even joke that you might be fun at parties because you definitely are not invited to them. What is actually wrong with you? Seriously! What is wrong with you?!
Yes it can always get much worse.
Even through the heartbreaks and struggles she has to deal with, the mother still wants to help other parents. That's a very strong mother. I hope her and her family always live in the best of hope and joy.
She’s an amazing mom. I’ve been following her and her family’s journey for a while now… I cannot imagine what she’s going through. I pray for them 🙏
My 7 year old daughter just passed on May 22 from DIPG very similar to your baby girl. It is the most painful feeling to go through watching your child suffer without being able to fix it XXX sending you love and prayers
Sending you heart felt condolences on the loss of your little girl.
Thank you Mom and Dad for sharing and educating us about Sanfilippo syndrome. I've never heard of it before. Thank you for sharing Hayden with us. She is simply gorgeous, and you are selfless and kind.
Hello Noonie how are you doing?
You are so sweet.
I watched my Dad fade away from dementia. It was the hardest thing I have ever been through. I was his caregiver.
I cannot imagine what this family is going through. So much love to them. ❤️
Mom & dad are exploiting her on social media for their own fame and money, it's disgusting. The fact that I recognized that girls face right away, is absolutely shameful. Every kid deserves privacy. Every kid. Even if their parents don't think they deserve it.
@@JB-ln2nx Be quiet!!
@@JB-ln2nx listen I totally understand where you're coming from but when it comes to diseases and things like this it's good to share. Advocacy is a far cry from exploitation. This also helps immensely financially because having a child with any kind of medical issues can get very expensive.
@@anntaylor8065 report them
@@JB-ln2nx Carrie (Haidyns mom) Is EDUCATING PEOPLE on Haidyn’s Condition She is Not exploiting Haidyn can not speak or advocate for herself You are very f*cking ignorant
I appreciate that the parents are advocating for their baby. They are thinking about other children who may have this illness in the future. God bless them on this journey.
Never heard of this condition. Thank you for sharing. I hope there's a treatment some day for this.
ua-cam.com/video/QBHZoLvTTEQ/v-deo.html
My friends son has this condition. It’s absolutely heartbreaking.
I didn’t even think this was possible….so sad🙏🏼
What happens when you inject aluminum into babies and children?
I follow them on Instagram. So heartbreaking and so unfair that they have to watch her deteriorate. The love they give Haidyn and everything the do for her is awe inspiring. Praying and wishing for a cure and better treatment options. 💜
Mom & dad are exploiting her on social media for their own fame and money, it's disgusting. The fact that I recognized that girls face right away, is absolutely shameful. Every kid deserves privacy. Every kid. Even if their parents don't think they deserve it.
@@JB-ln2nx Tell me would you have know about Sanfilippo syndrome if you hadn’t watched Hayden or Logan or any of the other children on social media? Answer, no. To get a cure you have to make the illness more known, only way to do that is to show people the reality of the illness, so companies and people are willing to invest in a cure, so other parents don’t have to see their kids suffer.
@@JB-ln2nx it’s called raising awareness
@@JB-ln2nx you are the shameful one for spouting your stupid opinion that literally nobody in this comment section cares to see. These people are fighting for their daughter, what are you doing? Commenting shit from behind a screen. Wow how brave you are 🙄 stop being so sanctimonious, I guarantee you’re probably an awful person.
@@JB-ln2nx Maybe it would help someone else recognize an undiagnosed problem since it is so rare.
I want to mention the mom and dad. Having a disabled child can and sadly frequently destroys relationships, but evidently not yours!... truly an inspiration for other parents struggling with whatever challenges they are facing.
That mom is so incredibly strong and I hope that she has many more years with her daughter
😞 we all don’t realize how important healthy is until we see this.
She will live a full life, she’s built for this life
Mom & dad are exploiting her on social media for their own fame and money, it's disgusting. The fact that I recognized that girls face right away, is absolutely shameful. Every kid deserves privacy. Every kid. Even if their parents don't think they deserve it.
@@JB-ln2nx Why don’t you take a hike buddy with your obsessive posting the same on every comment on this video. No one is interested in your conspiracy theory.
@@JB-ln2nx what do they have to lose in this situation? This is one of the few times where getting “attention” from the world might not be the worst idea.. because the situation is so shitty, it could bring about change
@@JB-ln2nx that's pretty harsh and they're not doing such thing.
vaccine damage given another name to divert what is really going on
This totally breaks my heart. I have to fight to hold back tears. I couldn't imagine being the parent. I have worked in long term nursing for almost 22 years and even though they have lived long meaningful lives it's still sad to watch the decline due to dementia. Extremely sad for a baby or young person. Prayers and send love to all
Mom & dad are exploiting her on social media for their own fame and money, it's disgusting. The fact that I recognized that girls face right away, is absolutely shameful. Every kid deserves privacy. Every kid. Even if their parents don't think they deserve it.
She's so full of life, it's hard to think there's a "monster" in her, stealing said life. She's so beautiful.
I’m so sorry y’all are having to go through this. I can imagine how precious every day y’all get with her is.
This poor family. I wish them every bit of happiness.
She is an absolutely gorgeous little girl. I am so sorry you are all going through this. Sending you tons of love and light 💖🕯
What a beautiful little girl. I’m so honoured to be the proud mum of a Therapy Dog working at a special needs school from primary to adulthood. I’ve learnt so much from kids like Haidyn. Her parents are doing such a great job of loving her. 🥰🙌🏽🙏🏼
My heart and prayers go out to this sweet family.
This sweet baby girl...sending many hugs and love to them all💗💗💗
Mom & dad are exploiting her on social media for their own fame and money, it's disgusting. The fact that I recognized that girls face right away, is absolutely shameful. Every kid deserves privacy. Every kid. Even if their parents don't think they deserve it.
@@JB-ln2nx get a life, loser
She's beautiful. I'm so sorry your family is going through this.
I always knew there was a few cases of children having a dementia, but this is the first time I have actually seen it. What a poor girl. Shes an angel.
Omg it broke my heart to hear her say “I love you too” 😭😭
Parents exposing and exploiting minors on the internet where predators live, is what makes my heart break and makes me cry. The fact that society looks at this like it is OK to expose a minor without their informed consent, to predators online, is shameful. This culture disgusts me.
@@JB-ln2nx so you’re mad the child couldn’t consent to bringing awareness?
@Recue exactly.I think that persons that says there exploiting her is just attention seeking.
OMG! This is so heartbreaking! I just cried watching this not just for that beautiful precious baby girl, but for her parents as well. I'm so so sorry. We never expect to see dementia in a child, but in the eldery, like my 82 year old mom. I just feel so sad about the whole situation.
I follow her on Instagram. Such a strong and brave little girl. With parents that take such good care of her. So much love in that home. God bless them all… including her older sister. 💜 💪
This made my heart so happy to see that Haidyns mama got to share her story. She is such an amazing and attentive to this little angel. May God Bless this family 💜💜💜
This angel, omg, I just want to give them a hug. I can’t imagine the pain.
My son is autistic and he was doing so good meeting milestone after milestone until 2 years old . I suffer everyday thinking of his condition but he will forever be with me by my side hopefully i will outlive him cant imagine seeing my child physically going thru a terminal confition
I went thru the same with my son. He was a little behind one stopped talking and never said another word for years. The first time he said mama, he was 5 years old. Don't give up on your child. I fought like hell for my son. He is now 16 and if you met him, he's normal PIA teenager. It was not easy to get to this point but he made it. You've got 5 years to cram as much as you can into that brain, after that it's too late. Make that child as independent as you can.
I'm very sorry to hear this. Was your son fine then developed autism at age two?
@@naturegirl2110 I can completely relate. I have never found another mom who says their child regressed from talking. Everyone I’ve met says their child never talked. Just before two, my son woke up one day a completely different child and never spoke again. He’s now 5 1/2 and while we have found some improvement, I can’t help but watch old videos of my baby and see what he once was. My heart is eternally broken but I can’t imagine watching any of my children slowly fade away. You should never have to bury a child. It’s just not right.
@@alyssamarie333 You have to fight to get the light back in his eyes. It took years but he's OK now. First thing is you can do is get back eye contact. If you need any tips let me knew and I'll give you my email address.
@@naturegirl2110 thank you so much. That is our biggest achievement actually! His eye contact is amazing now and I’m so grateful for it. I can see the thought processes going on in his head and how frustrated he is that he can’t tell us. In the past few months he’s started to listen better too. He’s still not the little boy he once was but I have hope. Thank you for being a wonderful fellow autism mom. We need more people like you. ❤️
She’s such a beautiful baby. We love you Haidyn
I had a wonderful mom who had Alzheimer's. I know what it's like to see your loved one slip away one day at a time. I would mourn every time she would change into the next level of the disease. Enjoy every day,every minute. You won't regret it. Keep up the good job you are doing as parents.
You have given so much love and happiness to your sweet daughter! Thank you for bringing more awareness to us all.
Mom & dad are exploiting her on social media for their own fame and money, it's disgusting. The fact that I recognized that girls face right away, is absolutely shameful. Every kid deserves privacy. Every kid. Even if their parents don't think they deserve it.
What an unbelievably SAD story! My heart 💙 goes out to this precious baby girl and her 💗 loving parents and family! Praying 🙏 🕍 for Health, Love, Comfort, Light, & Healing
My heart goes out to her and her family! Thank you for raising awareness.
It’s such a heartbreaking thing to have especially when your daughter is full of happiness in her face.. Wishing your family all the best and keep safe and advocates for cure.. from California
I cried so many tears 😭 my heart ❤️ goes out to the Mother and Father and the entire beautiful family ❤️
She has the most beautiful contagious smile … ❤
I hope this family stays strong and appreciates all the time they have with this child. All the best of support and love!
Watching this broke my heart. I lift up this baby’s loved ones, and her, in prayer 💞.
What a heartbreaking diagnosis at such a young age! My thoughts and prayers go out to this sweet family❤️
She’s absolutely a beautiful little girl I pray for her and you guys are doing an amazing job and great parents God bless the whole family
She is a truly beautiful child. Thank you for sharing a small part of her life’s journey here.
I am so sorry that you have to go through. Prayers and hugs.
She is beautiful and you can still see her personality shine through her disease. She is still her. Amazing story
Having lost my father at 85 to dementia, I couldn't imagine what this family is going through. My heart goes out to everyone effected by this cruel disease 💔
This is a child. Adults getting it is common
@@WickedlyMe328 They’re saying they understand what it’s like having someone in their family with dementia. Don’t diminish their experience. Don’t be rude. They meant nothing harmful by it and tried to come from a place of understanding.
@@Bri-op5ln it’s very different from a child! My grandmother had dementia. But a child has a rare genetic condition. Not even close
@@WickedlyMe328 ever heard of empathy?
@@WickedlyMe328 They are not saying that its the same! Read what she over again, comprehend it. She’s saying “she cant imagine what this family had to go through”. You can come from a place of similar understanding and not be drawing comparisons.
This is the first time ive heard about this condition. Thank you for making me aware that there is an illness just like this....Her parents are super Amazing!
So sorry. She's still beautiful.
Your daughter has a beautiful spirit. You've got every right to be proud of her & her accomplishments. Post updates of your journey so we can be praying for you & your family as you continue on your journey! Every journey has it's ups & downs & needs people to cheer them on. Let us be there for you! God bless you for uploading this video. Hoping that we will be seeing more of them.
She’s a beautiful girl both outside and inside and you’re both incredible and strong parents. As a daughter of a mom with dementia and Parkinson’s, and a mom to a daughter who’s fought cancer at 16, I know how exhausting, both physically and spiritually it can be, but you showed us that loving your family and being grateful for each day is possible, even when it’s so hard. God bless you and thank you for sharing this. I had no idea about this disease and it’s important we know so there can be money to work on a cure. God bless you all, you’ll be in my prayers. 🙏💜🙏
Aww she's soooo beautiful God bless this family and this precious angel
My heart breaks for you. I’m so sorry. She is so beautiful & precious.
It’s like a cruel cruel trick. You have a child that you love more than life itself only to lose them so soon. Nothing natural about burying your child. I’m so sorry mama. My heart is with you.
60 minutes Australia did a story on Sanfilippo syndrome. Wherein in families w/ childern who have Sanfilippo syndrome got together to speak about a new invetisagtional treatment & rasing awareness. One of the parents started a foundation.
I wonder if that investigational treatment involved The Keto Diet (20 carbs, OR LESS per day), since Alzheimer’s is also now referred to as Diabetes Type 3. IOW, even though SS is inherited, JUST MAYBE the Keto Diet could stop its downward progression…
She is such a brave and beautiful child. Bless her and your family.
This breaks my heart… great parents to a little angel- bless you Hayden
This is a heartbreaking situation. Close friends of mine have a daughter with San Filipo and she is 9. These family go through so much and cherish each day.
As a parent this would kill me inside knowing my child would be battling this illness,I hope they find a cure for this beautiful child ❤️
Sharing this in Central Alabama. My prayers are with her and the family.
Thank you for sharing this story. What a beautiful lil person ❤️ The parents are doing an amazing job.
When she snatched the flower out of hand and ate it, that made me smile. 🤍
She’s a beautiful little girl. My heart goes out to you mom and dad for embracing her and how you’ve chosen to deal with it all. 💕🙏🏼🙏🏼🙏🏼
Mom & dad are exploiting her on social media for their own fame and money, it's disgusting. The fact that I recognized that girls face right away, is absolutely shameful. Every kid deserves privacy. Every kid. Even if their parents don't think they deserve it.
She seems like such a sweet child. I will pray every night for this family. Haiyden is such a beautiful child. I would love to meet her and give her a big hug. I am as proud as her mother of her to keep fighting. What a heart warming story and I wish you and anyone else struggling with a child with terminal illnesses like this to keep going. Savor your precious time with them.
Yeah keep praying
@@dieterrosswag933 i will
I didn't know this existed. I'm so sorry. Thanks for sharing. Absolutely heart breaking.
I'm so sorry for your pain. I can't even imagine as a parent, kudos to your family for loving her and sticking it up for her not breaking down and giving up. Y'all are in my prayers 🙏
Look at those Brooke Shields’ eyebrows! She’s such a beautiful girl❣️ I’m so sorry you are all going through this. God be with you. Haidyn is that little miracle in your life showing you what’s important and what needs to be priority. 🙏🏼 Much love & prayers sent your way. Thankful she has such amazing parents! 🙋🏼♀️
That’s what I was thinking ! She’s so uniquely gorgeous
God prayers my ass
Heavy, dark eyebrows are a trait of this disease. If you look up pictures of kids who suffer from it, they have similar features.
@@guccideltaco- I actually did shortly after this, and noticed that. Very odd because that’s a beauty feature. Yet, saying that, why would anyone who has a disease or special in any way have to have a bad feature?? So they have pretty features. 🤷🏼♀️ Thank you for pointing that out as I’ve noticed they all have these features, some stronger than others. She IS beautiful & that doesn’t even matter. What matters is not being in pain & having a joyful life. 💯😘❤️
@@dieterrosswag933- Why would you say that? Do you know them & not like them? Why??
My heart goes out to this family.😢God please bless this family!🙏🏼❤️
Parents exposing and exploiting minors on the internet where predators live, is what makes my heart break and makes me cry. The fact that society looks at this like it is OK to expose a minor without their informed consent, to predators online, is shameful. This culture disgusts me.
What a beautiful child. Life can be so unfair. Sending love. xxxx
What a sweet family... I can tell how much they love each other.
Oh no :'-( this is terrible. Its unbearable in elders but in a little child? I am devastated for this family - how absolutely precious every moment of lucidity must be to them all. I send them absolute love, all the way from North Yorkshire to them.
#HaiydnStrong
We LOVE YOU BABYGIRL!
WE LOVE YOU MOMMA&DADDY
She has the quality of life that she dose because of your love, hard work and dedication to her sweet soul❤️
My heart and prayers go out to this family. This girl is such a strong brave fighter. It’s beautiful that she enjoys her life with her parents and the rest of her family. 🙏🫶🏼
what heart goes out to this beautiful family
I’d never heard of this disease before, but having seen my father suffer with dementia, can only imagine the pain this family must feel seeing how Sanfillipo is affecting their beautiful little girl. My heart goes out to them and I pray that one day a cure will be found.
fancy name for vaccine damage
@@lucymiller6616 Do you need it spelled out for you what the video said? It's genetically inherited. Both parents were heterozygous for this condition. Because the child carries two copies of the gene that carries the disease, she is homozygous for the disease and it is present in her body. Please find me some studies that prove vaccine damage exists while you're chewing on this.
@@xxx-ie9ic So, some people are genetically predisposed to vaccine damage.
I pray God strengthens you and your husband to continue the fight of love and care for your daughter. It can’t be easy. I commend your for sharing this information. It will help someone else feel not so alone.
Mom & dad are exploiting her on social media for their own fame and money, it's disgusting. The fact that I recognized that girls face right away, is absolutely shameful. Every kid deserves privacy. Every kid. Even if their parents don't think they deserve it.
@@JB-ln2nx I disagree. They are raising awareness about this syndrome and encouraging parents to test their genetics before starting a family. If this couple had done a genetic testing they would have prevented this pregnancy.
@@socal2085 And wouldn’t that be sad for them to have been deprived of this beautiful little girl. I’ll never understand why some people think that people who are different, have shorter life spans or more pain than typical are somehow no longer valuable, and their life is not worth living.
Bless this beautiful child.
She is absolutely beautiful. Praying for you're family and all the other families. A cure needs to be found
Such a beautiful girl. Press on, mommy and daddy. You are her heroes!
Parents exposing and exploiting minors on the internet where predators live, is what makes my heart break and makes me cry. The fact that society looks at this like it is OK to expose a minor without their informed consent, to predators online, is shameful. This culture disgusts me.
@@JB-ln2nx clown 🤡🤡🤡🤡🤡🤡
not sure if i missed it or not. where are the links to the family, to the awareness pages, funds? imagine all these views having a link that we could directly donate to? That would have been game changer. Do better GMA dont just share their stories for views. May Haidyn smile everyday and enjoy every moment, thanks to her parents for being beautiful role models!
This breaks my ❤️. Be strong for her. I will pray for you and your family. Keep smiling beautiful baby girl.
She is absolutely gorgeous and strong. Breaks my heart to see this adorable little girl going through this 😢
Wow, I can't even imagine. It's not fair. Sending good vibes their way ✨️
Imagine exploiting your vulnerable child all over the internet where Pedophiles and predators live... imagine..
Mom & dad are exploiting her on social media for their own fame and money, it's disgusting. The fact that I recognized that girls face right away, is absolutely shameful. Every kid deserves privacy. Every kid. Even if their parents don't think they deserve it.
@@JB-ln2nx Dig a hole & crawl in it! Do you have any kids??
What a beautiful baby❤️
I can't imagine the pain she's going through... My Daddy had dementia, & my Gramma has Alzheimer's...... Seeing what they went through & they were ADULTS.... I just CANNOT imagine everything this sweet baby goes through.... Absolutely BREAKS my heart.....😔
She is beautiful and has wonderful parents
So heartbreaking 💔 this little girl is absolutely beautiful.