#batten

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+931일 #희귀난치병 #batten# #어리둥절👀 . . 헉..우리 천사 짱혀누🧚‍♂️ 한달사이 몸무게가ㅠㅠ😱 30개월 키90.5에 몸무게 10키로.. 자꾸자꾸 살빠지면 어떻게하뉘ㅠ 오늘밤부터 마니마니 먹고자..이놈아ㅠ 미세먼지 쩌는날 정기외래.. 아빠랑 셋이 병원.. 이래저래 걱정이 많은.. 강직도 다시 생기고. 소발작도 여러가지 다시오고. 밥도잘안먹고. 다리에 멍울도잡히고. 머리는자꾸만 흰머리카락이 생기고. 이래저래 걱정걱정걱정... 좋은이야기 듣고가쟈용~😍

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thedesignory. We love timber. Whilst it is often used to warm up a space and add a n

We love timber. Whilst it is often used to warm up a space and add a natural element; timber can be a great way of adding architectural detail to your home and directing your eye throughout the room. This New Zealand Home designed by Sills van Bohemen has achieved just that by using timber battens on this staircase design, directing the eye upward. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ #staircase #batten #thedesignoryloves #naturaltimber #timber #homedesign #homerenovation #spaceswelove

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ayahshawqi. #Repost @setareh_eskandari_89211 (@get_repost)
・・・
4 Sisters👸👸👸👸 @

#Repost @setareh_eskandari_89211 (@get_repost) ・・・ 4 Sisters👸👸👸👸 @ayahshawqi @rune_john @zahoora_mohad @setareh_eskandari_89211 صورة جميلة مرسلة من (أم ستارة ) من #ايران .. تجمع أجمل الفتيات .. خصهن الله سبحانه بميزة الجمال والطهارة والبراءة .. اجتمعن من كل ارجاء العالم فقط ليعطونا دليلا على أن الانسانية تجمع البشر .. نفس المرض #ncl ونفس الاحاسيس ونفس المعاناة .. في #البحرين او في #روسيا او في #ايران او في #السعودية او اي من الدول .. آية تبعث لكم كل الحب والود جميعاً .. . A beautiful picture of the most beautiful girls gathered .. God gave them the privilege of beauty and purity and innocence .. Gathering from all over the world only to give us evidence that humanity brings people together .. . The same disease #ncl and the same feelings, same suffering .. In #Bahrain or in #Russia or #Iran or #ksa or any of the countries .. Aya sends you all the love and affection all of you 😘😘😘 . . at the age of #8_years #ayah #ncl #Neuronal_ceroid_lipofuscinosis #ncl7 #batten #bahrain  #rare_disease #raredisease . #آية #ريحة_الجنة #البحرين #حبيبة_أمها #جمال  #وراثة #الدماغ #الأمراض_النادرة  #مرض_نادر #باتن

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ayahshawqi. .
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ﺛﻢ ﻳﺮﺯﻗﻚ ﺍﻟﻠﻪ ﺭﺯﻗًﺎ ﻳﺘﻌﺠﺐ ﻟﻪ ﺃﻫﻞ ﺍﻷﺭﺽ
ﻭﺍﻟﺴﻤﺎﺀ .. ♥
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[ ﺳﻴﺠﺒﺮﻙ ﺍﻟ

. . . ﺛﻢ ﻳﺮﺯﻗﻚ ﺍﻟﻠﻪ ﺭﺯﻗًﺎ ﻳﺘﻌﺠﺐ ﻟﻪ ﺃﻫﻞ ﺍﻷﺭﺽ ﻭﺍﻟﺴﻤﺎﺀ .. ♥ . [ ﺳﻴﺠﺒﺮﻙ ﺍﻟﻠﻪ ﺟﺒﺮًﺍ أﻛﺒﺮ ﺑﻜﺜﻴﺮ ﻣﻦ ﻛﺴﺮﺗﻚ ،،، ﺟﺒﺮاً ﻳﻠﻴﻖ ﺑﺮﺣﻤﺘﻪ ] 🤲💔 #ثق_بربك #جمعة_مباركة 💛💛 . . . في عمر 8 سنوات و 11 شهر بتاربخ 18-01-2019 . . #blessed_friday 💛💛 . . at the age of #8_years #ayah #ncl #Neuronal_ceroid_lipofuscinosis #ncl7 #batten #bahrain  #rare_disease #raredisease . #آية #ريحة_الجنة #البحرين #حبيبة_أمها #جمال  #وراثة #الدماغ #الأمراض_النادرة  #مرض_نادر #باتن

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zephyr_and_stone. • Z+S crush • Timber battens 🙌🏻
Anything that adds warmth, texture,

• Z+S crush • Timber battens 🙌🏻 Anything that adds warmth, texture, pattern and style to a space has our vote 👊🏻 When timber battens are used in a series, they create a linear effect that defines a space, often without obstructing light and views 👀 Z+S especially loves timber battens used on stairs, ceilings or as room dividers 👏🏻 This design feature can be cut and crafted individually or installed as a prefabricated and modular system 🙌🏻 Coming to the Townhouse Project very soon... 👯‍♀️✌🏻 ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Image 1 - @basedesign.ir Image 2 - design @milieu_creative, builder @baseconstructionperth Image 3 - @staarchitects Image 4 - @architectsajc Image 5 - @figr_architecture Image 6 - @studio_1_architects Image 7 - @buro.82 Image 8 - @breeleech Image 9 + 10 - @mclarenexcell

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rameelin. Happy Rare Disease Day! —-
This is Mabel.
She was born in the middle o

Happy Rare Disease Day! —- This is Mabel. She was born in the middle of summer heat with the darkest head of hair you have ever seen. She was tiny and barely cried. Mabel displayed many strange and frightening symptoms, including seizure activity, at around 2 weeks of age. Mabel was my third child so in my soul I understood that things were really bad very early on. I spent 2 years searching tirelessly for her diagnosis. Mabel was diagnosed with Neuronal Ceroid Lipofucsinosis or 'NCL' (batten disease) 2 days after her 2nd birthday. ✨ NCL's are a group of inherited, neurodegenerative, lysosomal-storage disorders characterized by progressive intellectual and motor deterioration, seizures, and early death. Visual loss is a feature of most forms. There is no treatment and no cure. Mabel had the earliest and most severe form. ✨ My darling girl never met a typical milestone. She could not see, eat, sit, roll over, crawl, or walk. She could however smile and responded to our voices by giggling and grunting. She spent many days [and ultimately years] of her life suffering; crying, seizing and body jerking. There was very little relief from her disease. ✨ Her diagnosis was terminal and her specific prognosis was 4-6 years of age. At age 2 1/2 (6 months after her diagnosis) I enrolled her into a hospice program. She lived out the rest of her life in the comfort of our home, doing everything that we did as a family. For us, this was the best decision we could have made. ✨ Mabel left my arms for Heaven on May 29, 2015 just before her 5th birthday. She died at home, with her siblings and family around her. We had prepared for this day so meticulously that we were able to keep her at home with us until we buried her later that same evening. Again, though unconventional, I am so grateful for these decisions that we were able to make that were SO right for our family. Because Mabel's disease gave us the knowledge of what was to come, we were able to prepare for her death and in doing so, felt incredible peace. ✨ This gift that God gave us is precious. For questions about Mabel's symptoms, diagnosis, or batten disease please feel free to ask!

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willherndonfund. 10 days until HOPE Under the Stars 2018!  10 years of believing, what'

10 days until HOPE Under the Stars 2018! 10 years of believing, what's your favorite HOPE memory? Spread HOPE and join us, tickets on sale now: https://bit.ly/2zUtk6g

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ayahshawqi. .
#قبل_سنتين
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 بين فترة وأخرى تظهر إشعارات في الموبايل لتذكرك بذكريات

. #قبل_سنتين . بين فترة وأخرى تظهر إشعارات في الموبايل لتذكرك بذكرياتك قبل فترة .. فظهر لي هذا الفيديو .. انتابتني مشاعر متناقضة .. فابتسمت لجمالها ولطافتها 😍.. وتحسرت على حالها 💔.. تحتار كلماتي في وصف مشاعري .. لكن أقول .. سبحان مغير الأحوال .. قادر على كل شيئ 🙏🙏 . #ذكريات_آية_الجميلة #نطق_آية في عمر 5 سنوات وشهر بتاربخ 11-04-2015 . #rediscover_this_day an old video from my mobile notifications #two_years_ago . at the age of #5_years #ayah #ncl #Neuronal_ceroid_lipofuscinosis #ncl7 #batten #bahrain #rare_disease #raredisease . #آية #ريحة_الجنة #البحرين #حبيبة_أمها #الدماغ #الأمراض_النادرة  #مرض_نادر #باتن

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blippy_bfries. Thanks #greatwolflodge for letting us play and make memories!  We love

Thanks #greatwolflodge for letting us play and make memories! We love to let our #Batten girls just be kids here and not think about their disease, even for a moment. #tailsfromgreatwolf #raresisters

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lafitlighting. INTRODUCING VERY INNOVATIVE PRODUCT - \" DINA\" 
Model No: LFSL1020R
LED

INTRODUCING VERY INNOVATIVE PRODUCT - " DINA" Model No: LFSL1020R LED: CREE Available in: 3000K / 4000K IP Rating: IP32 Cutout: 58x48mm Cutout Dia: 50mm Wattage:2.5W Adjustable Beam Angle: 20 to 60 degrees Please feel free to contact us if you have any query. Log on to www.lafitlighting.com #DINA #LafitLighting #LED #Lighting #Power #Saving #EcoFriendly #BeTheLight #Architecture #walllamps #Surface #Realestate #InteriorDesigners #Architects #ArchitecturalLighting #SpotLight #QuikSeries #fumagalli #Outdoorlighting #Brillo #ProSeries #ProfileLights #ProjectLight #DownLight #StripLights #StreetLights #StreetLamps #SurfaceLights #PanelLights #Batten

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rshokudokomado. 🔴本日です🔴
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ランチ11時半~13時半(L.O.) 14時閉店
夜はFMステージに出店の為
店舗はお休みです。
.
お待ちしておりま

🔴本日です🔴 . ランチ11時半~13時半(L.O.) 14時閉店 夜はFMステージに出店の為 店舗はお休みです。 . お待ちしております♪ . R食堂 ☎︎0538338383 #mindjive #fmステージ #gezan #bacho #noexcuse #findaline #batten #R食堂 #磐田市 #カレー

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thebattenbeaters. En het is weer weekend! Met een tussenstand van bijna €8.500 zijn wij

En het is weer weekend! Met een tussenstand van bijna €8.500 zijn wij uiteraard weer gemotiveerd om dit weekend flink aan de slag te gaan 🚴. Zelfs als je hand in het gips zit... #gemotiveerd #stortenmaar #doneren #donerenmagnogsteeds #donerenislief #donerenmaar #donerenmag #letsbeatbattens #batten #battendisease #beatbatten #goeddoel

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1930s_cambridge_renovation. Project dadager keeping us busy for the next few weekends 👷🏼‍♀️👷🏽‍

Project dadager keeping us busy for the next few weekends 👷🏼‍♀️👷🏽‍♂️ #batten #insulation #1930shouserenovation

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the_avid_gardener. Our #bespoke #batten #fence with inset #planters under construction...

Our #bespoke #batten #fence with inset #planters under construction...watch this space for the finished product. #garden #gardendesign #gardening #gardenchat #landscaping #customdesign #contemporary #design

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Mislite li da tih kaj bi stisnuti gumb ima sve više?? Moram kupit kartu za Mjesec čim prije!! #barbaric #world #moon #ticket

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Contact Timber Solutions for a quote on all roofing material. We stock the widest range of structural timber in the KZN midlands at the lowest prices guaranteed 🌲 #smallbusinesssa #construction #76mainstreethowick #roofing #batten #rafter #purlin #timbersolutions

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lapointe83. #jameshardie#batten#newconstructionhome
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rshokudokomado. 【今週末です♪】
🔴ご予約絶賛受付中🔴
マジでおすすめの今年一発目のライブ出店!!
※当日の店舗営業は昼のみ
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1/19(土) 磐田F

【今週末です♪】 🔴ご予約絶賛受付中🔴 マジでおすすめの今年一発目のライブ出店!! ※当日の店舗営業は昼のみ . 1/19(土) 磐田FM STAGE 『MINDJIVE Vol.28』 ~磐田FM28周年記念~ Silence Will Speak release Live . GEZAN bacho NO EXCUSE FIND A LINE Batten(OA) . [FOOD]R食堂 . ADV¥3000/DOOR¥3500 (+1D) 高校生以下¥1000(+1D) 保護者同伴で小学生以下2名まで無料 . リプライ、DMでも予約可能です! . . #mindjive #fmステージ #gezan #bacho #noexcuse #findaline #batten #R食堂 #磐田市 #カレー

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ielts_vocab_manager. Highest rated IELTS Vocabulary App in iTunes App Store! Try it!

#IELT

Highest rated IELTS Vocabulary App in iTunes App Store! Try it! #IELTS #IELTSTest #IELTSExam #IELTSverbal #IELTSVocabulary #VocabularyApp #IELTSWords #IELTSPrep #IELTSapp #IELTSscore #IELTSPractice #batten to thrive by feeding; grow fat.

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findaline_jp. 1/19(sat) “MINDJIVE” Vol.28 -Jimmy pre.-GEZAN [Silence Will Speak] rel

1/19(sat) “MINDJIVE” Vol.28 -Jimmy pre.-GEZAN [Silence Will Speak] release TOUR- GEZAN/bacho/NO EXCUSE/FIND A LINE FOOD:R食堂 ADV¥3,000/DAY¥3,500 1D別¥500 高校生以下 ADV&/DAY¥1,000 1D別¥250 保護者同伴に限り2名迄小学生以下入場無料 #findaline #bacho #noexcuse #gezan #batten #mindjive

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thebattenbeaters. En wat een gave bedrijven hebben ons geholpen om weer dichter bij ons

En wat een gave bedrijven hebben ons geholpen om weer dichter bij ons doel te komen! Dankjewel Anker Stuy Verven B.V. , Tubro Filter- Lucht- en Verbrandingstechniek, Duivestein Techniek Oss en DH Automation Technology voor jullie donaties! #trots #gemotiveerd #stortenmaar #doneren #donerenmagnogsteeds #donerenislief #donerenmaar #donerenmag #letsbeatbattens #batten #battendisease #beatbatten #goeddoel

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reitsmaassociates. One of the top shoots from the Wilson photo shoot!
. 
www.reitsmadesig

One of the top shoots from the Wilson photo shoot! . www.reitsmadesign.com.au/instagram

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acmeneguelli. John D. Batten, 1987. 
#batten

John D. Batten, 1987. #batten

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New Breathable Felt Membrane and Pressure Treated Battens With Upvc Support Trays To Property, Reusing Existing Tiles 👌😎👍 #mason #masons #masonsroofing #roofing #roofinglife #roofingworld #roofingculture #roofingcompany #newroof #property #felt #membrane #batten #upvc

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thebattenbeaters. Ja hoor, weer een nieuwe mijlpaal aangetikt! We zijn al over de €8.000

Ja hoor, weer een nieuwe mijlpaal aangetikt! We zijn al over de €8.000 heen 😃 Dankjewel weer allemaal. Die €10.000 komt in zicht!! #trots #gemotiveerd #stortenmaar #doneren #donerenmagnogsteeds #donerenislief #donerenmaar #donerenmag #letsbeatbattens #batten #battendisease #beatbatten #goeddoel

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sekizukas. 1/19(sat) “MINDJIVE” Vol.28 -Jimmy pre.-GEZAN [Silence Will Speak] rel

1/19(sat) “MINDJIVE” Vol.28 -Jimmy pre.-GEZAN [Silence Will Speak] release TOUR- GEZAN/bacho/NO EXCUSE/FIND A LINE FOOD:R食堂 ADV¥3,000/DAY¥3,500 1D別¥500 高校生以下 ADV&/DAY¥1,000 1D別¥250 保護者同伴に限り2名迄小学生以下入場無料 #findaline #bacho #noexcuse #gezan #batten #mindjive #山下 #iwatafmstage

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tatsuyasaiki. ‪来たよ来たよー!‬
‪フライヤーが!‬
‪今週土曜日は磐田FM stageへ!‬ ‪県内、県外問わず集まるべきだなー。‬
‪このメンツは次

‪来たよ来たよー!‬ ‪フライヤーが!‬ ‪今週土曜日は磐田FM stageへ!‬ ‪県内、県外問わず集まるべきだなー。‬ ‪このメンツは次いつ見れるかわかんねーよ。‬ #findaline‬ #bacho‬ #noexcuse‬ #gezan‬ #batten‬ #mindjive‬ #山下‬ #iwatafmstage‬

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