Natalie: Rett syndrome and facial differences

[@gamerscreed9768]

Im a med student and currently studying different genetic diseases, one of which is Rett sdr. I sometimes get caught up with studying and stressing over grades that i forget to actually look at real life and see the people that i wish to heal one day. I hope she rests peacefully now, free of her earthly chains.

[@MarkArrand-cf4cl]

When others would have turned away, you didn't. That makes you stronger than most. You have my respect and admiration. ❤

[@juliewinkler9203]

Rest in peace, sweet Sophia 💙

[@cactuscallie5090]

This woman is an angel. She's a true role model for ALL mothers. Definitely for me. The world has been so cruel to her and her baby. I can't imagine enduring what this strong, beautiful woman has endured. She gave her daughter the best life possible.

[@andrealuisecandido1154]

i don'T have children wiTh disorders

[@cactuscallie5090]

@@andrealuisecandido1154 I'm sorry? I really can't understand your comment.

[@virginiaconnor8350]

@@cactuscallie5090 I do. Either she can't understand what it's like to have a baby who's anything less than "perfect" or she-like my former neighbour-is boasting how "perfect" she is when I simply mentioned I couldn't eat this or that-Diabetes and allergies-and how she could eat anything she wanted-or both. Sherri was the controlling type who'd interrupt me when I was telling her about my experiences in college and ask why my hands were red or whatever (some non-sequitur). I also have Attention w/Adult Defficent Disorder and would get sidetracked because I wanted to finished what I was saying because I knew (from experience) that she didn't believe I had even gone to college. She did the same with my friend Kelly who has mild CP and has 3 college degrees. She also drives a car, worked many years,, is married, and has a son in the same college where we met (UNG). I have 1 BA-Art-at GSU and no children, but I also worked and still can't afford a car, but have visual problems and don't care now that I'm 67. Sherri moved away and another friend said she died-?-in '18. I'm sure she might've been jealous, but she never said she was. I'd rather concentrate on positive people who uplifted me and Kelly feels the same. Seeing Sophia uplifted me because I used to work at a centre and later a daycare for special needs children, teens, and adults and some of my students were even mainstreamed into public schools and the others went to private schools or group homes later. One of my favourite students-Denise-had Rett Syndrome too. Very sweet girl in her teens I remember in '78.

[@georginabarus6340]

I love how honest mum is and how she reflects on her love, fears and how it shaped her outlook. I have soo much admiration

[@esajuhanirintamaki965]

What is most admirable, little Sophia did have all the beauty in her eyes.

[@stephaniefalzone7937]

Sophie is a beautiful girl inside and out I love her so much, she was blessed with a beautiful heart smile and family ❤

[@AndreaCandido-w9r]

who knows ,who knows ? no ID.EA

[@sheilametcalfe9467]

She was a very bright and lovable child. A beautiful soul with a beautiful smile.

[@ACGreyhound04]

Rest in peace little Sophia!! 😢😢😢😢

[@the_5th_night]

Rest easy, little girl!

[@Miamicanes73]

I'm a 76-year old attorney in Ft. Lauderdale. God gave me a special revelation about this little angel early this morning which explains her unique condition. She has profoundly changed my life. How beautiful she is.

[@littlegirllost2654]

What was the revelation? I’m profoundly curious.

[@EllEss331]

There are 1,000's of gods that humans have believed existed. Since you're an "attorney", you know you first need to prove/establish your particular "God" actually exists before you can claim anything else. How would an "attorney" go about proving such a "God" exists?

[@katrinaolsen2444]

Sweet Sophia has such an amazing family. I saw an interview with her little brother who is just the sweetest kid. He talked about how much he loves Sophia and how beautiful she is. Sophia could sometimes answer verbally but she also had a device that she could push to communicate her words. It’s just devastating that Sophia has passed. She really was the sweetest, strongest, funniest little girl. I’m glad to have seen her story online. She was a real Angel who graced this world with her presence. ❤❤❤❤❤❤❤❤❤❤

[@daisysmith9728]

She has a big beautiful smile. Her soul shines through her eyes and face. God bless her she left a big amount of love on this earth 🌍❤️

[@tiffanystott9923]

Natalie Weaver, if you read this, I admire and adore you for your fight for children with disabilities and facial deformities rights and anti bullying, she should join forces with Tami Wetmore, Julianna Wetmores mom, Juliana is the girl with worst case of treacher Collins syndrome who went threw same exact thing as Natalie did, trolls used Julianna's picture for abortion and said horrible things about her, I believe the two of them would be a force!!!

[@asschezch]

Damn, i could not be as strong as this woman.

[@hairybaldwin1663]

Natalie, this was a beautiful message. I know Sophia has been gone about a year. You have my heartfelt sympathy. Pat in Penna.

[@amybeaver4542]

You are such an amazing woman 🥰 Your daughter is an angel sent to teach us all. Thank you so much for being strong and loving her the way you do and for sharing your story with us 🌹 God bless you all 💖🌹🙏🙏🙏

[@fredrickmoore3011]

RIP Sophia weaver..

[@agathahofmann6977]

Its okay to be scared and shocked and it needs a little time to work through your systeem. But the bravery is right behind that and it is even stronger and it makes her face radiate joy and love ❤️ Open your heart

[@mikemoola2101]

Sophie was such a happy girl. Her smile and laughter was contagious. I just started watching the Grow With Sophie episodes. She was adorable. I loved the video of Sophia's YES button. So cute 🥰

[@happyaspiemom]

Beautiful mother , beautiful amazing brave Sofia , beautiful family ! What Nathalie and her husband have done is simply obey God command : love ! Their reward in heaven will be as great as their love . God bless you all atypical families . 😍😍🙏🙏

[@simonascacchi145]

Natalie, I run into your family's story accidentally some days ago: since then I've watched every single video YT kept suggesting to me. My admiration for you is beyond words, you're the best mom ever, your children are lucky and Sophia has had a happy life. You and your husband are raising good human beings, thanks for that. I keep thinking to Sophia everyday, with a smile. Thanks for telling this story.

[@Seekthetruth.Dontfollowblindly]

Her other two children are growing up with love understanding compassion and accepting people for who they are regardless of their disability even facial disability and also seeing the beauty they have inside and out.

[@roncc1616]

God-bless Sophia and yourself and family

[@minervasmith1459]

It's a miracle that this child was here for 10 years, born this moment in time to this Family who absolutely accepted and loved her, Sophia was here for a reason. She had the best life while she was here.... Sophia is with the Angels and will become. an Angel that was her path to fulfill ❤❤❤❤❤ Journey On Sophia ❤❤❤❤

[@terierichards1366]

Thank you for educating us. ♥️.

[@kimmyfriedman7469]

Sofia was beautiful! I'm so sorry for your loss.

[@tiadavenport5465]

You're amazing. I know that I couldn't handle her situation nor would I want to put my other children through all of that. Who's going to care for her when you're gone? The financial responsibility alone would bankrupt most families. Again, you're amazing.

[@wrenbyrd1093]

Rest In Peace. 🌹🌸💐🌺🌷

[@mpdmpd8118]

really a strong family

[@אילנהחזן-ד4ש]

She's awesome kid and wonder...

[@AndreaCandido-w9r]

... am also wondering only : how

[@idk_xx21]

Amazing family.

[@jeffstanley4593]

God bless you.

[@pohanahawaii]

🤔 There goes the argument of *Quality vs Quantity* of life. I can understand if it's like Christopher Reeve where the mind is intact and you can still understand, communicate, and choose things. It's entirely something else to have little comprehension of everything around you or any choices in the matter, what to do, where to go, how to live, when to die. Just being *subjected to 2-3 operations per yr for 10 yrs* and in constant state of recovery was Torture but to what end? *Sophia's parents oversimplified things* when they told people it's just "facial, hands, and feet deformities." It's so much more including *limited cognition and severe physical limitations.* For instance, *she never progressed mentally, emotionally more than a few months old* and they couldn't even teach her to push buttons like dogs/cats to communicate. *She only lived as long as 10.5 yrs* because of their needs for her to be with them, and *thanks to the 28 surgeries* costing Millions. I admire her parents for their blind faith, tenacity, and words of warmth, acceptance, and love but, in the end, it was still their will and desire overriding hers and Nature every step of the way because *a few minutes of videos here and there showing Sophia "laughing" do NOT translate to emotional depth and sentiments or override her long months and years of tremendous suffering.*

[@SamanthaFlutieTutie]

Bless you all.

[@natashakhan5196]

Stay strong ❤️❤️

[@debbiereed5359]

I just couldn't be a mother to someone like her. It would freak me out. Glad u were able to

[@konjurekatrina]

Sophia was such sweet, smart girl. She could talk using assistance. She understood every word. She loved her family and wanted to be part of the conversation. She was so much different from the little l cared for who has RETT.S❤he got a lot of physical therapy. She was in a stander for 2 hours a day. She did not want to socialize with anyone. She seemed happiest watching a tv show for toddlers. I tried other shows for older kids and she was not interested. To be honest she mostly had a dour expression on her face and wasn’t interested in socializing. Her mom said she wrote book reports and other things. But I find that hard to believe. She got a couple of new nurses she didn’t like. She couldn’t 🎉communicate why. They got some women who want an expert in the eye gaze, Tobi computer communication. This women couldn’t tell what was up. Her siblings did not pay much attention to her. They had given up. She’s graduated from HS. Her mom has her doing art projects using her eye gaze computer. I hope it’s really her who is enjoying making artistic pictures. She has a voice that speaks for her. They’ve given her a bit of a Russian accent even though no one in her house has an accent. I hope it’s really her who is creating the eye gaze art. And I hope she really does have friends

[@SuperflySister]

I feel so bad for this child and her family

[@delfingarcia8590]

God love all of us!

[@olindadejesusrodriguezmosq4147]

Qué Sophia, descanse en paz por la misericordia de Dios y brille para ella la luz perpetua. Amén

[@vacisvacis2115]

♥️

[@TCB_MAMA]

rip Sophia 😭

[@paulinevanderhoff9007]

Poor child. How awful to be born like that.

[@CarolSchenkl]

But she had so much love in her life.

[@marvinadarby8212]

Why were they not able to somehow fix her mouth? So she could have been more comfortable ?

[@lizaholt8322]

And why didn't they do something with your mouth so you didn't ask a question like this??

[@obeyfearsubmit]

What were they supposed to do? Give her a prosthetic fvcking face?

[@natashakhan5196]

May Allah bless this family...lots n lots of prayers for you ❣️

[@lorridenny836]

She is beautiful!!!!

[@crystaljackson9148]

🙏🙏🙏🙏🙏🙏

[@pnoknlee4880]

Strong mom.

[@sharulnizam4376]

😍🥰🤩✌️😘

[@НатальяЕгорова-ъ7г]

Они у вас от зависти такое делают?Если с дитём не всё нормально,почему не говорят сразу.

[@dirkoertel1624]

🙏🏻😍🙏🏻

[@Sunflare-vq2uy]

RIP

[@mizukigamer3517]

Remember i playing piano with five fingers and sophia have a four fingers

[@davidrobertson1060]

Natalie I've been following your story and I've listened to everything and I feel like at what point do you have to or almost need to draw the line and instead of doing what's right for you because it's been mostly about you and how your gonna stop people from making fun of your daughter, your two other children always looked scared to death when they had to go on camera. I'm all for protecting your child and loving your child but when you bring in two other one's that don't begin to understand that's when it's not protecting any longer. How about speaking about the other two I'm positive they also have wonderful loving traits. U wish your family well....

[@abhipraynoel]

I have drawn of your Picure Sophia

[@AndreaCandido-w9r]

we have no Kids wiTh such disorders had no

[@teresamiles3826]

Your daughter that doesn't have retts is absolutely stunning, with a personality added i just pray to God that u gave her just as much attention as you did Sophia back then because it sure isn't depicted in your actions as a mother

[@virginiaconnor8350]

I'm sure she has plenty of time to make up for the time she chose to focus on Sophia. Many of my special needs students at Brook Run, an institution, were not destined to live a long time and many died later anyway. Does it matter now the short time she had with Sophia? Some parents neglect, beat their kids, and even murder them. They were parents at BR that dumped their "special" kiss there and went back home to live within their "normal" children. Natalie didn't do any such thing.

[@Mariposa91]

how she go to the bathroom 🙄

[@foxyboop4164]

@Frank Zhou Trying to figure out what's so funny about a colostomy bag?

[@foxyboop4164]

She probably is incontinent, why don't you ask the mother? You'll be incontinent too one day...

[@bobbyanderson7233]

@Frank Zhou You’re a freaking dumbass!!!

[@MAGNUM05]

@@bobbyanderson7233 That's for sure

[@cyntiaangelie8157]

How do you use the bathroom? Your emoji shows your ignorance. Be thankful and start having empathy for others.

[@HannaAxelsson-rw2rh]

🤢

[@howardstern8720]

Halloween is over

[@sarahelliott7926]

I know you are not the real Howard Stern. Obviously Halloween is over because it is now almost Christmas. Sophia was not scary, she was very sweet and she had a beautiful smile. Although sadly she passed we should celebrate her life instead of making stupid comments like yours! Go find something better to do with your time!

[@lizaholt8322]

So why are you still wearing that HATEFUL MASK?? GO SOPHIE WE LOVE YOU BEAUTIFUL ANGEL,

[@lwscijunkie]

I doubt you'll see this or reply, but I have to ask what you got or get out of these kinds of comments? I mean...you must get some kind of gratification...Are you trying to hurt? To shock? What?

[@gemman]

To comment that about a helpless (now deceased) child ...what is wrong with you?

[@rosaatempa8481]

No, you are still alive. 🤮

[@CancelHappiness]

Dear God

[@obeyfearsubmit]

She was tough as nails. 30 surgeries?