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#rettsyndrome

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سلام خدا روشکر نگارجونی
بهتره فقط یکمی خوابالوئه
کلی برای عشقم‌شعر خوندم سرحال شده ...
نگار جز اینکه اهنگ خیلی دوست داره بهش ارامش میده ... عاشق اینکه براش شعر و قصه بخونیم .
ب اجازه پرستار بردم کمی چرخ زدیم تو سالن اومدیم کمی بهتره‌.
ممنون از دوستانی ک همیشه انرژی مثبت+
میدن .
دوستانی هم ک میخوان تو انجمن خیریه همدلی ب مدیریت خودم کمک کنن .. لینک گروه تو بیو پیج نگارجانمه .

دوستان مهربانی هزینه نداره سعی کنید...
با هر روشی دل بندگان خدا رو شاد کنید .
حتی اگ پولی برلی کمک ندارین .
#مهربانی_هزینه_ندارد
#سندرم_رت
#rettsyndrome
@banoo_nasiri68

I share a lot about why I love being Evie's Mom in this space. Seeing and emphasizing the good is something I am naturally great at. It's my home base. Talking about the reality of the job is much more difficult for me, but despite the fear of being so vulnerable, I'm going to share. 💆🏼
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Some of you might have noticed it's been a bit quieter in this space this last month or so, and mostly that's because I've just been so incredibly drained. And if I'm honest, a lot of that is because of #rettsyndrome.
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Lately Ev has been really irritable. Shes having panic attacks during the day for reasons I don't understand, and will suddenly start hitting herself, crying and moaning, pulling her hair, hyperventilating, and screaming. When she's stressed she likes to unload my bedroom dresser and throw my clothes all over the room or throw food around my house - pick up a spoon full of yogurt and hurl it, like a baby might. She sometimes eats things that aren't edible, like pieces of sidewalk chalk and markers, and then stains my walls blue. I have to watch her CONSTANTLY.
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I am really really lucky, because I don't do this job alone. I have friends who'll sit on the porch with me and hug me and listen to me. I have a VERY supportive spouse who is here with me as much as possible, and Evie has wonderful grandparents nearby. I stay afloat emotionally because I have people I can rely on who will help me, I have a lot of privilege. But not everyone has that support in their lives, and there are, right now, caretakers all over the place who are DROWNING under the weight of their responsibilites.
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If I can shine a light on that, I want to. If I can remind you to be extra kind and aware, then I want to do that, too. Please don't worry about me, I've already got my troops in place 💪🏻 👭👭👭👭 but if you can reach out and be a support to someone else in your life who might need it, I hope you will. I firmly believe that's where we find all the beauty this life has to offer; it's found in shedding the image of perfection, and actually caring for and KNOWING the people in our lives. If Ev gets to remind us of anything, I think she'd want it to be that. 💕 #imnotaperfectmom

💜💛❤️ Super Special Siblings of the Day!! Please help us congratulate @manasr408 ... Double tap and  Show them that super sibling Love!!!! 😍😙😍😙♥️💙
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🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹
Tag Your Special Needs Siblings at #specialneedssiblings so we can see and feature you!!! 👏👍😍 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

We've got lots to celebrate in October-- including Retts Syndrome awareness month! 💜 for those who know my sister knows that she is the sweetest most precious thing ever! ⭐️🌈We LOVE having them come visit! @curerett07 @pattyduke07 @jaketolman
Music licensed through #songfreedom



#rettsyndrome #rettsyndromeawareness #familyhalloween #halloweenvibes #pumpkinpatch #familytime #familyvideo #videographersofinstagram #videographers #temeculavideographer #socalvideographer #instagood #videoblogger #vlogger #vlog #momblogger #momtogs #mom #sisterlove #communityovercompetition #videoedits #videography #videogram #videoshoot

Любимая поза в коляске 🙄 Щеки свесила, такая деловая 😏 Настроение последние дни не очень, полагаю из-за погоды 😒 София очень метеозависима 🌪 А у вас с этим как дела? #мояособеннаядевочка #синдромретта #rettsyndrome #особенныйребенок #моямалышка

I have been wanting us to go vego/vegan for a long time now bc i find our digestion is a heap slower when we eat meat (plus ethical values too). I was in the flow today... (must have been bc i was wearing my happy pants!). Tonights menu:

For the kids - baked sweet potatoes with vegetable stirfry & a cashew & avocado sauce.

For hubby & I - Veggie thai red curry on a bed of caulfiflower rice.

Some days you win, some days are impossible but today we WON!

Feeling proud 👍😊

Awesome pic! RepostBy @special_needs_siblings: "💜💛❤️ Super Special Siblings of the Day!! Please help us congratulate @ticoquix ... Double tap and  Show them that super sibling Love!!!! 😍😙😍😙♥️💙
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🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹
Tag Your Special Needs Siblings at #specialneedssiblings so we can see and feature you!!! 👏👍😍 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"

Had such a fun time at #JocelynsJourney. Such a beautiful cause and so glad that my amazing girlfriend can be part of it. Always wishing the best for the Jones, their beautiful girls and of course amazing beautiful JoJo. #rettsyndrome #support #loveher

Из Тайского архивчика 😍
Пупсёнку тут полтора года 👶🏼
Помню, как я радовалась, когда у неё начинало получаться садиться ☺️ Своим странным способом, лёжа на животе, сгибая ножки и руками подгребая к ним поднимала себя, как гусеница 🐛😂 Если что, то до сих пор такой способ актуален 😄 Со спины редко поднимается, хотя очень много этому учили 🤷🏼‍♀️
Ползание у нас сейчас уже почти на пятёрку 🖐🏽 С ходьбой пока не торопим, поскольку чувства равновесия совершенно нет, а чтобы ему сформироваться, необходимо вдоволь наползаться 🐌
Мамочки спрашивали по реабилитации в Чехии, планируем на апрель-май 🛩
Зимой лучше на моря 🌊
Через неделю Софа с бабушкой и дедушкой улетают в Турцию на 2 недели ☀️⛱
А с зимним отпуском пока не определились 😬 Такие дела 😊
#мояособеннаядевочка #синдромретта #rettsyndrome #солнечныйангел #люблюбольшежизни

MOST RECENT

Esta imagen es parte del vídeo original que hizo mi abuelita en el 2015 y lo compartió con la comunidad Rett a través de facebook. Aquí están algunos de los síntomas del síndrome de Rett.

Gracias abuela, te amo💖😘. .

Seguimos luchando contra el Rett. .

#UnaPrincesaDeLuz #PrincesaDeLuz 
#PrincessOfLight #RettSyndrome #SindromeDeRett #Rett #RTT #Octubre #October #Morado #Purple
#MesDeConcientizacionDelSindromeDeRett
#RettSyndromeAwarenessMonth
#EstoEsRett #ThisIsRett
#Sintomas #Syntoms #Concientizar #CrearConciencia #Awareness
#MiAbuelaHaceDeTodo #AbuelitaTeAmo
#Valencia  #Venezuela

"Most people see what is, and never see what can be." Albert Einstein

A tender moment with Sophie and her Dad at the Boulder Creek Festival on May 25, 2009. Her bright eyes and smile just light up my heart.
Sophie has Rett syndrome, a rare non-inherited genetic postnatal neurological disorder. Rett Syndrome occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of their life: their ability to speak, walk, eat, and even breathe easily. .
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#inspiration #rettsyndrome #love #strong #rett #awareness #inspirationalpeople
#messagetotheworld #omfproject #love #wefightrettsyndrome #togetherstronger #armyofus #familytime #moments

❤️Keep Smiling ❤️😁 #BFF

Bringing some awareness to Rett Syndrome this month. Rett syndrome is a rare non-inherited genetic postnatal neurological disorder that occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily.

Walk and Roll Fundraiser on August 10, 2016 at Clement Park.
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#inspiration #rettsyndrome #love #strong #rett #awareness #inspirationalpeople
#messagetotheworld #omfproject #love #wefightrettsyndrome #togetherstronger #armyofus #friends #joy #smile #girlpower

I'm usually in a great mood and always try to find laughter in life but she is my trigger. Tia don't play,educate yoself before assuming or thinking you understand! #rettsyndrome #Gabs #fuckyourpettiness #norelevancewhatsoever

‘We create FREEDOM for our children when we HEAL OURSELVES’. Our suffering has a ripple-on effect to those surrounding us. When we focus on nurturing & healing US, then we see shifts in our loved ones too ❤️

For my friend @bgood12711 & her little girl💜read about them below. Clickable event link's in my insta profile/bio section! This is happening NOW!:) "Our Nashville Kendra Gives Back event will be held again for the 3rd year in a row! Join us at the #NASHVILLE @kendrascott in Green Hills and start your Christmas shopping early while you also support finding a CURE for #RettSyndrome! Kendra will donate 20% of all sales between 5:00 - 8:00 PM to Girl Power 2 Cure for Rett research!

PHONE ORDERS will also be accepted for those that cannot attend or are out of town - to the NASHVILLE Green Hills Store --(615) 600-4353. Only in-store or call-in orders will count toward this event!" Part of Blake and her family’s story from their website (https://www.jointeamblake.com/our-story-living-with-rett)--
"July 7, 2014 On this day, we met enemy #2 - a formidable foe. The genetic test confirmed that our sweet little girl of 3-and-a-half years has Rett Syndrome. RS robs little girls of the ability to speak, walk, and have purposeful use of their hands and limbs. Breathing issues, scoliosis, osteoporosis, and seizures may be in our future. RS has been likened to a mix of Autism, Parkinson’s, Apraxia, and Epilepsy – all rolled together. We were devastated by the news, but a strange peace came also. Three years of guessing, searching, crying, wondering, praying, and questioning led us to this. We now had focus, and specific direction. Our prayers are now specific, and we could ask others to pray as well. "Today -We still cling to hope, but a bit redefined. We hope in our God, and we also hope in a cure on this side of heaven. The devil is in the Rett Syndrome, but our God is in the cure, and there is tangible hope for that cure. Scientists have reversed RS in mouse experiments, and symptoms improved. Please click here and here to learn more about the exciting discoveries and on-going work to translate this into a viable treatment for our Rett girls. It could take awhile, but we will do our part to speed it along. Our goal is to raise awareness and money for Rett research and treatments, AND, to make Blakely the best possibly Blakely she can be while we wait." 💜

#Repost @untilshecan (@get_repost)
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Life with Rett... // Day 23 - We carry these purple cards with us to help spread awareness. We’ve given them away in airports, restaurants, church, school... // #lifewithrettsyndrome #rettsyndrome #teammartilee #untilshecan @gp2c

Life with Rett... // Day 23 - We carry these purple cards with us to help spread awareness. We’ve given them away in airports, restaurants, church, school... // #lifewithrettsyndrome #rettsyndrome #teammartilee #untilshecan @gp2c

Mac’s @bhblazershockey team sporting shirts for #rettsyndrome Awareness month @jwhl. #proud Thanks to @tshirtconnectionwpg for the excellent service.

We've got lots to celebrate in October-- including Retts Syndrome awareness month! 💜 for those who know my sister knows that she is the sweetest most precious thing ever! ⭐️🌈We LOVE having them come visit! @curerett07 @pattyduke07 @jaketolman
Music licensed through #songfreedom



#rettsyndrome #rettsyndromeawareness #familyhalloween #halloweenvibes #pumpkinpatch #familytime #familyvideo #videographersofinstagram #videographers #temeculavideographer #socalvideographer #instagood #videoblogger #vlogger #vlog #momblogger #momtogs #mom #sisterlove #communityovercompetition #videoedits #videography #videogram #videoshoot

#Repost @thebabynation (@get_repost)
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Start your Monday off with the story of @pinkpuzzlepieces! Learn how parents Cora and Trey maintain a routine for twin toddlers that share 99% of their DNA, navigate a recent diagnosis of Rett Syndrome and build a dedicated medical team. Listen now on @itunes ⬆️ Link in bio.
#CureRett #rettsyndrome #thisisrett #rettsyndromeawareness #rarediseases #specialneeds #neurodiversity #iamhervoice #momlife #twins #parenthood #toddlers #autism

💜💛❤️ Super Special Siblings of the Day!! Please help us congratulate @manasr408 ... Double tap and  Show them that super sibling Love!!!! 😍😙😍😙♥️💙
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🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹🔹
Tag Your Special Needs Siblings at #specialneedssiblings so we can see and feature you!!! 👏👍😍 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

Start your Monday off with the story of @pinkpuzzlepieces! Learn how parents Cora and Trey maintain a routine for twin toddlers that share 99% of their DNA, navigate a recent diagnosis of Rett Syndrome and build a dedicated medical team. Listen now on @itunes ⬆️ Link in bio.
#CureRett #rettsyndrome #thisisrett #rettsyndromeawareness #rarediseases #specialneeds #neurodiversity #iamhervoice #momlife #twins #parenthood #toddlers

Had such a fun time at #JocelynsJourney. Such a beautiful cause and so glad that my amazing girlfriend can be part of it. Always wishing the best for the Jones, their beautiful girls and of course amazing beautiful JoJo. #rettsyndrome #support #loveher

Aquatics Therapy puts the fun back into therapy and brings a sense or “normal” to individuals with Rett Syndrome. Saguaro Aquatics, is Tucson based. They currently help two individuals with Rett Syndrome by strengthen their low muscle tone, teaching them water safety and bringing smiles into their therapy sessions. This is a Therapy Reimbursement Scholarship Pretty Halos covers. To learn more about Saguaro Aquatics visit their website. To apply for a scholarship click on the link in our bio

#pRETTyHalos #rettsyndrome #aquaticstherapy #rettsyndromeawarenessmonth

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