Mom of 7-year-old with 'childhood dementia' shares story to fight for a cure l GMA 

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. ❤️❤️❤️

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.

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..

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 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

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!

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.

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.

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

@Peanut know what? 🤨

@@user-jb1mb5xh9t about this diese im asuming

@Peanut he might not know about this child

ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-QBHZoLvTTEQ.html

​@Peanut ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-QBHZoLvTTEQ.html

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

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!

Sending you heart felt condolences on the loss of your little girl.

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.

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 didn’t even think this was possible….so sad🙏🏼

What happens when you inject aluminum into babies and children?

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

ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-QBHZoLvTTEQ.html

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.

Hello Noonie how are you doing?

You are so sweet.

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

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.

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

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.

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. ❤️

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.

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??

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.

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.

Yeah keep praying

@@dieterrosswag933 i will

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…

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.

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 🤡🤡🤡🤡🤡🤡

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.

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.

Woe be unto parents who decided to bring forth children! Their self-imposed task in life is so difficult, made so much more difficult if their child happens to be born as anything that is not what society defines as normal! Sob! That aside, my heart goes out to parents who have terminally ill children. That is heartbreaking and no parent should have to go through that. It has nothing to do with being neurotypical or neurodivergent though. This is a disease, like cancer. I'm just tired of seeing people compare neurodivergency to cancer-like diseases or parents victimizing themselves over how tough it is for them to raise a child with "special needs". Our needs aren't special, just different from yours.