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

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

[jentra]

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 💜💜💜

[laurenclare]

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.

[heathermcbane]

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.

[hotpotatoeshotpotatoes]

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.

[bethwoodward]

My heart goes out to this family what a brave little girl she’s absolutely beautiful

[cmadam]

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.

[sandraarauz]

“We’re doing this so kids in the future don’t go through what we are going through” what a heart of gold💛

[erindrewfeltzcontreras]

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.

[NikkiKnowsSoaps]

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.

[zombiesinyourbackyard]

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.

[theworld_is_a_littleblurry]

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.

[Eucis]

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.

[PBWK]

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.

[LianneHutcheson]

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. ❤️

[jbmbxht]

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

[jenniferquackenbush]

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. ♥️♥️♥️

[tschandraheinze]

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

[libraqueen]

I've been working with dementia patients for over 15 years this breaks my heart to see somebody so young go through this😡😔

[Lacymead]

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 🙏

[webwolf]

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