#rettsyndrome

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@kktml とっても可愛いレオンくんと、イケにゃんたるとくんのママさんから、#おめめくりくりバトン を受け取りました🎵.
ママさん、ありがとうございました😌💓.
お目目キラキラのはなと、しーちゃんの可愛いお手々のコラボpic.です✨.
知っている方も多いと思いますが、私の21歳の娘、しーちゃんはレット症候群という難病を患っています😌.
レット症候群の症状の中に『手もみ』があり、一生懸命にもみもみするのでお手々には傷があります💦.
でも、生まれた時にはピアニストにでもしようかしらという程、指がすらりと長く美しい手でした😍✨.
このお手々にはたまに美味しいものがついているので、はなはしーちゃんのお手々をペロペロするのが大好きです🐶🎵🎵🎵.
写真の説明をしようと思ったらよく分からない事になってきましたが😅.
はなは私に何かくれるの?ってお目目くりくりきらきらです😆💕
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お忙しい所、申し訳ありませんが、@meruanche めるちゃん、アンジェちゃん、シェリーちゃんママさん、良かったらバトン受け取ってください。
スルーしてくださっても大丈夫です💓.
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#ゴールデンレトリバー #しーちゃんは娘ちゃん #しーちゃんはレット症候群 #ゴールデン #goldenretriever #golden #dog #dogstagram #rett #rettsyndrome #手もみ

FAMILY FRIDAY!!! 😚😚😚😚
❤️😍❤️ 💕 Super Siblings of The Day!! 💕 Let's show some love and support to our special needs and special siblings of the day!! @mirisphotography Show Love!!!! .
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Tag Your Special Needs Siblings at #specialneedssiblings so we can see and feature you!!! We Love Our Super Sibs!! 👏👍😍 Thank You For Being Apart of such a wonderful community!!
🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹
#specialneedssiblings #specialneedsparents #specialneedssister #specialneedsmoms #specialneedsdads #specialneedsbrothers #specialneedsfamilies #support #epilepsy #autism #downsyndrome #brothers #family #congenitalheartdefect #disability #disorder #dwarfism #wheelchair #therapy #sensory #sisters #lupus #lyme #criduchat #angelmansyndrome #rettsyndrome #adhd #mitochondrialdisease #chargesyndrome #sotosyndrome

Notre petite cocotte prend des forces. MERCI ...au personnel soignant #hopitalpierreboucher #superinfirmieresetinfirmiers #rettsyndrome #notrepetitange #beaucoupdamour

This makes my mom heart want to burst! Love this sweet girl so much!!!Henslee didn't want to leave the music at summer fest! #summerfest #rettsyndrome #music #misshenslee

Наши маленькие успехи 👏🏽☺️😍 Уже что-то похожее на ползание 🐌 #мояособеннаядевочка #особенныйребенок #синдромретта #солнечныйангел #rettsyndrome

Ekkert nema gleði, hljóp á undir klst og safnaði 50.000 kr fyrir lækningunni á Rett syndrome ❤️🏃🏼‍♀️🏃🏼‍♀️ #marathon #rettsyndrome

Yesterday evening Rett Syndrome took our Amira from us. Even in death, our sweet Amira continues the fight to find a cure. Her brain is the first to be headed to Harvard in order to furthermore the studies of the permanent damage that Rett Syndrome has on the brain. And if Amira is still fighting this horrible disease, then so will we. We will continue to bring awareness and do our part to furthermore the research for better treatment and a cure. Thank you all that have supported us by reading our posts & informational pamphlets & articles about our Amira & Rett Syndrome. Also thanks to all of you who supported our campaigns & purchased our #rettsyndromeawareness caps. We will miss Amira's contagious laughter and bright eyes. We love you forever more. ❤💜 #rettsyndrome #ilovesomeonewithrettsyndrome #welders4rett #irsf #iwearpurpleforrett #girlpower2cure #silentangels #ilovearettgirl #yomeunoalretto #untilshecan #curerett #rettmonster #reverserett #raiseawareness #cammycan #mipequeña #muyprontolosmuertosvanadespertar

Lovely night with great company @jowilsontv and @emilyward88 raising money and awareness for #cureforDylan & #rettsyndrome. Getting closer to that cure 🤞🏻! Thanks to @makeupclaire and @shanihodge for getting me ready for it x

MOST RECENT

New video uploaded to YouTube for my daughter, who is 3 years old struggling with Rett Syndrome. My angel is absolutely in love with @teddysphotos song, "Thinking Out Loud". As she's unable to speak, she can't really tell us what's wrong or if she's in pain. It leads to a very frustrating life. The moment we put that song on, she's instantly smiling and laughing and becomes the warmest little girl you've ever seen.
I've put the link in my bio to the video. If anyone could please check it out, share/like the video I would greatly appreciate it. I'm really hoping to one day get it in front of Mr. Sheeran's eyes so he knows just how grateful we are to have something that brings our baby so much joy.
Thanks, guys.

#edsheeran #rett #rettsyndrome #littlegirl
@edsheeran_eu @ed_sheeran_official_ @edsheeran_hug @edsheeran.cherry_opinions @edsheer @edsheeranmemesoficial @edsheeranews @edsheeranews @ed.sheeran.lyrics

Aunque mi apraxia no me permite hablar, mi familia ha aprendido a leer mi mirada y mi sonrisa demuestra cuán feliz soy.

Tenía 2 años.
Marzo 2013
#UnaPrincesaDeLuz #PrincesaDeLuz 
#PrincessOfLight #RettSyndrome
#SindromeDeRett #Rett #PrincesaRett 
#RettPrincess #RettGirl #NiñaRett 
#Niña #Girl #Bebe #Baby
#Child #Cute #Hermosa
#HelloKitty #Felicidad
#Happiness
#GoFundMe 
#Valencia #Venezuela

Yo no sé ni en que momento ni con que cuerpo es que ella va para high school ... tan especial que es la única que empieza una semana después! #firstdayofschool #redhair #puma #pink #autistic #rettsyndrome #celebralpalsy #mdsymdrome #specialgirl La Niña más fuerte del mundo esa eres tú mi Nicole...! 🗣 #teamo

Yesterday evening Rett Syndrome took our Amira from us. Even in death, our sweet Amira continues the fight to find a cure. Her brain is the first to be headed to Harvard in order to furthermore the studies of the permanent damage that Rett Syndrome has on the brain. And if Amira is still fighting this horrible disease, then so will we. We will continue to bring awareness and do our part to furthermore the research for better treatment and a cure. Thank you all that have supported us by reading our posts & informational pamphlets & articles about our Amira & Rett Syndrome. Also thanks to all of you who supported our campaigns & purchased our #rettsyndromeawareness caps. We will miss Amira's contagious laughter and bright eyes. We love you forever more. ❤💜 #rettsyndrome #ilovesomeonewithrettsyndrome #welders4rett #irsf #iwearpurpleforrett #girlpower2cure #silentangels #ilovearettgirl #yomeunoalretto #untilshecan #curerett #rettmonster #reverserett #raiseawareness #cammycan #mipequeña #muyprontolosmuertosvanadespertar

@kktml とっても可愛いレオンくんと、イケにゃんたるとくんのママさんから、#おめめくりくりバトン を受け取りました🎵.
ママさん、ありがとうございました😌💓.
お目目キラキラのはなと、しーちゃんの可愛いお手々のコラボpic.です✨.
知っている方も多いと思いますが、私の21歳の娘、しーちゃんはレット症候群という難病を患っています😌.
レット症候群の症状の中に『手もみ』があり、一生懸命にもみもみするのでお手々には傷があります💦.
でも、生まれた時にはピアニストにでもしようかしらという程、指がすらりと長く美しい手でした😍✨.
このお手々にはたまに美味しいものがついているので、はなはしーちゃんのお手々をペロペロするのが大好きです🐶🎵🎵🎵.
写真の説明をしようと思ったらよく分からない事になってきましたが😅.
はなは私に何かくれるの?ってお目目くりくりきらきらです😆💕
.
お忙しい所、申し訳ありませんが、@meruanche めるちゃん、アンジェちゃん、シェリーちゃんママさん、良かったらバトン受け取ってください。
スルーしてくださっても大丈夫です💓.
.
.
#ゴールデンレトリバー #しーちゃんは娘ちゃん #しーちゃんはレット症候群 #ゴールデン #goldenretriever #golden #dog #dogstagram #rett #rettsyndrome #手もみ

Nicholas (on left) is 7 years old. He has cerebral palsy and epilepsy. His brother Nathan has seen him through countless hospital stays and all his battles over the years. Throughout it all, he does whatever is needed for his brother and is one of the strongest 14 year old I know. I'm proud to call both of these children my own. They truly inspire me every day." --- They inspire us too!! 💙💚💛 ❤️😍❤️ 💕 Super Siblings of The Day!! 💕 Let's show some love and support to our special needs and special siblings of the day!! @onelife75 Show Love!!!! .
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🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹
Tag Your Special Needs Siblings at #specialneedssiblings so we can see and feature you!!! We Love Our Super Sibs!! 👏👍😍 Thank You For Being Apart of such a wonderful community!!
🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹
#specialneedssiblings #specialneedsparents #specialneedssister #specialneedsmoms #specialneedsdads #specialneedsbrothers #specialneedsfamilies #support #epilepsy #autism #downsyndrome #brothers #family #congenitalheartdefect #disability #disorder #dwarfism #wheelchair #therapy #sensory #sisters #lupus #lyme #criduchat #angelmansyndrome #rettsyndrome #adhd #mitochondrialdisease #chargesyndrome #sotosyndrome

❤️😍❤️ 💕 Super Siblings of The Day!! 💕 Let's show some love and support to our special needs and special siblings of the day!! @shanleighgow Show Love!!!! .
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.
.
🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹
Tag Your Special Needs Siblings at #specialneedssiblings so we can see and feature you!!! We Love Our Super Sibs!! 👏👍😍 Thank You For Being Apart of such a wonderful community!!
🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹
#specialneedssiblings #specialneedsparents #specialneedssister #specialneedsmoms #specialneedsdads #specialneedsbrothers #specialneedsfamilies #support #epilepsy #autism #downsyndrome #brothers #family #congenitalheartdefect #disability #disorder #dwarfism #wheelchair #therapy #sensory #sisters #lupus #lyme #criduchat #angelmansyndrome #rettsyndrome #adhd #mitochondrialdisease #chargesyndrome #sotosyndrome

Grace is more than just unmerited favor. It is the enabling to do anything one is called to endure or perform through the power of the Holy Spirit. #supernatural

❤️😍❤️ 💕 Super Siblings of The Day!! 💕 Let's show some love and support to our special needs and special siblings of the day!! @cassywhite82 Show Love!!!! .
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🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹
Tag Your Special Needs Siblings at #specialneedssiblings so we can see and feature you!!! We Love Our Super Sibs!! 👏👍😍 Thank You For Being Apart of such a wonderful community!!
🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹
#specialneedssiblings #specialneedsparents #specialneedssister #specialneedsmoms #specialneedsdads #specialneedsbrothers #specialneedsfamilies #support #epilepsy #autism #downsyndrome #brothers #family #congenitalheartdefect #disability #disorder #dwarfism #wheelchair #therapy #sensory #sisters #lupus #lyme #criduchat #angelmansyndrome #rettsyndrome #adhd #mitochondrialdisease #chargesyndrome #sotosyndrome

Day one at home. June woke up screaming around 3am last night - not sure what the issue was but we can only assume it is pain from her incision site. That has got to be one of the hardest things about having a non-verbal child - you're always trying to read body language and facial expressions to figure out what's wrong, but in the end, at least until we get further along in her alternative communication systems we're still just making our best guess at what the problem is. After some ibuprofen and some Netflix she finally calmed down and went back to sleep. She's having her breakfast this morning while we all chill out watching #toystory together. We're going to try giving June 6 smaller meals today instead of 3-4 bigger ones to see how she does. She had a few minor tummy aches yesterday - something she hadn't really experienced the whole time we were in hospital and most of the time there we were doing long slow feeds to get her used to it. I guess we're wondering if her body does better with less food more often. Again, back to best guess scenario... #rettsyndrome #gtube #nonverbal

Отгадайте, кто проснулся сегодня в 6 утра!?! Мама так рада!! Вот веду ее за руку, чтобы она от радости не упала 😂🤣👌🏽🤷‍♀️ guess who woke up at 6 am this morning? My mom's so happy about it! I help her walk so that she doesn't fall because she is so happy and excited 😜😂😋😴 #rett #rettsyndrome #rettsyndromeawareness #sindromedirett #ilovesomeonewithrettsyndrome #ihaterettsyndrome #синдромретта #ретт #curerett #curerettsyndrome #apraxia #fashionsupermia #supermia #superhero #supereroe

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