pb #spinalmuscularatrophy Instagram photos and videos - insta01pho.com
President Car Convoy Game


#spinalmuscularatrophy

Advertisement
Kyle loves to bowl! #spinalmuscularatrophy #bowling
0

Kyle loves to bowl! #spinalmuscularatrophy#bowling

We’ve had some Christmas fun this weekend, with two parades already! Lucy likes any and every noisy thing 😁 #Christmas #
2

We’ve had some Christmas fun this weekend, with two parades already! Lucy likes any and every noisy thing 😁 #Christmas#parade#spinalmuscularatrophy#trachlife

@xoalexa with a grateful perspective on life that we should all strive for. So much love for her❤️
. . . . .
Follow @spr
15

@xoalexawith a grateful perspective on life that we should all strive for. So much love for her❤️ . . . . . Follow @spreadlovemovement_to see more amazing and loving things that are happening in the world.

To już prawie ostatnie zdjęcia do filmu dokumentalnego, w którym
0

To już prawie ostatnie zdjęcia do filmu dokumentalnego, w którym "gram" siebie 😎 Dziś ekipa filmowa przyglądała się, jak zarządzam swoimi mięśniami, serio było co oglądać 😁 Dzięki metodzie EMG, zobaczyłam jak na skali wygląda praca moich mięśni - biofeedback wypadł BARDZO DOBRZE! To zasługa moich Rodziców, którzy sobie i mi nie odpuszczali ❤ byliśmy systematyczni i zdeterminowani... dziś dziękuję mojemu mężowi @piotr.roczniak, który znosi te wszystkie moje zachcianki rehabilitacyjne ❤❤❤ @pragma.systems👍 jesteście cudowni! #rehabilitacja#pragmasystems#trening#niematotamto#ćwiczenia#mięśnie#sma#spinalmuscularatrophy#wychodzimyzdomu

[I posted this caption a couple of days ago on my FB, but I think it’s good to post here, too 💜]
⠀
Today is a monumental
3

[I posted this caption a couple of days ago on my FB, but I think it’s good to post here, too 💜] ⠀ Today is a monumental day for Neely and for me, maybe even more for me than Neely. ⠀ This morning, I signed off and brought home THREE pieces of medical equipment that actually belong to us, to Neely. Anything we've ever used up until this point has been loaned, borrowed, shared, or given to her, nothing has ever been HERS, not even the wheelchair she uses everyday belongs to Neely. ⠀ But today, after hours, and I mean HOURS, MONTHS, (2) YEARS of paperwork, phone calls, doctors, appointments, meetings, denials, waivers, frustrations, tears... I did it, I got Neely her OWN stander, a bath chair, AND a ramp for the front door. I did that. For some families, it’s easier to get the equipment and care our kids need, and for some it’s harder. ⠀ For The Hahns, it’s been QUITE DIFFICULT. ⠀ Sometimes, I hate myself for how hard and heavy this all is for me. Like, hello, JUST DO IT and BE ALL OF THE THINGS (good, strong, happy Mom. Shake hands, bash heads, ADVOCATE ALREADY!), but when I signed those papers today (and right now) I cried with relief. ⠀ It's JUST therapy equipment, but boy did I fight for it. Boy did I have to argue, beg, scream, kissANDkick-ass to get it. Boy have I lost sleep, gained wrinkles, worried, and dreamed (yes, dreamed) over medical equipment. ⠀ It's a "little" thing. But it's been so hard. I've been pursuing a power chair for Neely for 2 years now... when the day comes that we actually get the damn chair, no joke, I WILL THROW A PARTY (you’re invited). ⠀ Because even though this stuff is for Neely, ***none of it just shows up at my door.*** It comes because of ME. Because I seek it, because I persist. ⠀ Getting this equipment for me was like a physical, tangible victory. Like a reward, my trophy. (Continued in comments)

Начало сбора 08.04.19.
С 01.12 по 07.12 счёт поступило:
✅СБЕРБАНК 5469520021351804 -1️⃣0️⃣3️⃣0️⃣0️⃣₽
Итог собрано: 6️⃣4️
0

Начало сбора 08.04.19. С 01.12 по 07.12 счёт поступило: ✅СБЕРБАНК 5469520021351804 -1️⃣0️⃣3️⃣0️⃣0️⃣₽ Итог собрано: 6️⃣4️⃣9️⃣4️⃣5️⃣3️⃣₽ Спасибо за все пожелания .🙏🏻🙏🏻🙏🏻 ... Все средства переводятся на безопасный счёт! Спасибо всем кто с нами🙏🏻 ... ‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️ ‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️ Реквизиты банка : 💳Сбербанк -5469520021351804 Получатель- Мама Тамара Багдасарян. Карта привязана к номеру 89525756877 💳QIWI - 89525756877 💳PayPal - bagdasaryan.raphael@gmail.com ‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️ #spinalmuscularatrophy #Спинраза #мойсынбудетжить #неждитечудосотворитеегосами#ростовнадону#благотворительность #спасиРафаэля#ростовпапа#ростовмама#однойцепью

Skye received her ankle-foot orthoses (AFOs) this week. This will help stretch out the ankles and muscles in her feet th
0

Skye received her ankle-foot orthoses (AFOs) this week. This will help stretch out the ankles and muscles in her feet that have been contracted since birth due to her SMA disease. Please consider sharing and donating to Skye's funding campaign to get her a life altering treatment: https://www.gofundme.com/f/SavingSkye #sickkidsvslimits#spinalmuscularatrophy#orthotics#ankleboots#babysteps#gofundmecampaign

Playtime is so much fun!
#sickkids #spinalmuscularatrophy #gofundme #kidssongs
0

Playtime is so much fun! #sickkids#spinalmuscularatrophy#gofundme#kidssongs

GoFundMe campaign to raise money to get Skye treatment #spinalmuscularatrophy #gofundme #gofundmedonations #sickkids #zo
0

GoFundMe campaign to raise money to get Skye treatment #spinalmuscularatrophy#gofundme#gofundmedonations#sickkids#zolgensma

We’ve been walking outside🎉 Eli decided he was taking himself to the park today and managed to get pretty far with just
0

We’ve been walking outside🎉 Eli decided he was taking himself to the park today and managed to get pretty far with just his walker! His new (big) wheelchair is due to arrive just after Christmas so hopefully he’ll be able to wheel himself to the park soon too🤞🏻♿️ - - - - - - - - #spinalmuscularatrophy#sma#spinabifida#spinalnervedamage#disabilityawareness#kidswithdisabilities#kidsinwheelchairs#physiotherapy#paediatrics#orthopedics#orthotics#neuromuscular

👉siepomaga.pl/alex👈
Podobno każda brunetka potrzebuje swojej blondynki. Mnie wczoraj na kolacji charytatywnej dla Alexa
19

👉siepomaga.pl/alex👈 Podobno każda brunetka potrzebuje swojej blondynki. Mnie wczoraj na kolacji charytatywnej dla Alexa w @why_thaiwsparły aż trzy: @dorotaraczkiewiczi jej @druzynaszpiku, @smakiwartepoznaniai grasująca po Poznaniu gagsterka @k.bujakiewicz💥💟 Ale kwota, którą zbieramy jest ogromna. Ponad 9 mln złotych... Do końca zbiórki wciąż pozostaje 2,5 mln i jest to nadal tak dużo, że ja po prostu nie mogę spokojnie jeść i spać... Nic dziwnego, że potrzebuję aż tylu blondynek w #teamAlex💥 Nie zapomnijcie o Alexie. Wspólnie udało się już tak wiele💟🙏💪 ° ° ° #alex#all4alex#westandwithalex#teamAlex#dlaAlexa#smashsma#sma#spinalmuscularatrophy#spinraza#zolgensma#rdzeniowyzanikmięśni#siepomaga#whythai#poznan

SMA UK has been nominated for an award in the category for ‘Charity of the Year’ in The Family Network National Recognit
0

SMA UK has been nominated for an award in the category for ‘Charity of the Year’ in The Family Network National Recognition Business Awards! We are delighted with this recognition of our work supporting people affected by SMA. #familynetwork#TFNAwards2020#support#supportservices#ourwork#business#businessawards#nomination#recognition#thankyou#charity#charitynominations#family#network#SMA#SpinalMuscularAtrophy#SMAUK#SpinalMuscularAtrophyUK

#ismayilli 
#Spinalmuscularatrophy 
#spinraza 
#spinalatrophy 
#spinraza🇦🇿🇦🇿🇦🇿🇦🇿🇦🇿🇦🇿🇦🇿🇦🇿🇦🇿🇦🇿
0

#ismayilli #Spinalmuscularatrophy #spinraza #spinalatrophy #spinraza🇦🇿🇦🇿🇦🇿🇦🇿🇦🇿🇦🇿🇦🇿🇦🇿🇦🇿🇦🇿

This week in NCAA Basketball was Jimmy V week, raising awareness and money for cancer research.⁣⁣⁣⁣⁣⁣⁣⁣⁣
⁣⁣⁣⁣⁣⁣⁣⁣⁣
James
1

This week in NCAA Basketball was Jimmy V week, raising awareness and money for cancer research.⁣⁣⁣⁣⁣⁣⁣⁣⁣ ⁣⁣⁣⁣⁣⁣⁣⁣⁣ James Valvano was the coach of several college basketball teams including leading NC State to a National Championship in 1983. After coaching, he was diagnosed with a terminal form of cancer. At the 1993 ESPYs, just 2 months before his death, he was awarded the Arthur Ashe Courage Award (now the Jimmy V Award) where he gave a historic speech the above quote was taken from.⁣⁣⁣⁣⁣⁣⁣⁣⁣ ⁣⁣⁣⁣⁣⁣⁣⁣⁣ I think everyone knows one person who has or has had cancer, if not multiple. It’s a horrible disease and something that’s always astounded me is just how many people it affects. I can’t imagine what those with cancer go through⁣⁣⁣.⁣⁣⁣⁣⁣ ⁣⁣⁣⁣⁣⁣⁣⁣⁣ This quote though, I can identify with.⁣⁣⁣⁣⁣⁣⁣⁣⁣ ⁣⁣⁣⁣⁣⁣⁣⁣⁣ Loss of physical abilities is the name of the game with Spinal Muscular Atrophy. If you’ve read my articles, you’ve read me share about many of the physical abilities I’ve lost, besides not being able to walk.⁣⁣ Some of them I can and will fight to get back. Through all of it though, there are 3 things that it can never, and will never, take away... my mind, my heart, and my soul! And because of that, no matter how much SMA takes away from me physically, it can never touch who I really am!⁣⁣⁣⁣⁣⁣⁣⁣⁣ ⁣⁣⁣⁣⁣⁣⁣⁣⁣ That applies to everyone.⁣⁣⁣⁣⁣⁣⁣⁣⁣ ⁣⁣⁣⁣⁣⁣⁣⁣⁣ There are a lot of things you can do physically, but I doubt most people will ever remember you for them. Most people will remember you by the way you treat them, good or bad. That’s the way you really impact the world around you. Not with physical abilities, though sometimes they may give you a platform, but with how you use your mind, heart, and soul.⁣⁣⁣⁣⁣⁣⁣⁣ ⁣⁣⁣⁣⁣⁣⁣⁣ James Valvano was a great coach and it gave him a big platform but, in the end, most people remember him for how he battled a horrible disease. They remember him for the impact he had on cancer research and awareness. And they remember him for a speech that continues to inspire over two decades later.⁣⁣⁣⁣⁣⁣⁣⁣ ⁣⁣⁣⁣⁣⁣⁣⁣ If you ask me, that’s how I want to be remembered.⁣⁣⁣⁣⁣⁣⁣ How about you?⁣ ⁣⁣⁣⁣⁣ #liveremARCably#myremARCs

▎幸也不幸的人生
.
我一直覺得自己是一位非常不幸,也非常幸運的人。
.
因為患有脊髓性肌肉萎縮症(SMA),再平凡的日常,哪怕只是吃飯、洗澡、睡覺,我都需要人幫忙,沒有辦法自己完成,疾病帶來的絕望與束縛是常人無法感同身受的,這是我覺得自己
0

▎幸也不幸的人生 . 我一直覺得自己是一位非常不幸,也非常幸運的人。 . 因為患有脊髓性肌肉萎縮症(SMA),再平凡的日常,哪怕只是吃飯、洗澡、睡覺,我都需要人幫忙,沒有辦法自己完成,疾病帶來的絕望與束縛是常人無法感同身受的,這是我覺得自己不幸的原因。 . 同時,我也很慶幸自己的努力能夠被看見;自己的聲音能夠被聽見,但也得時刻提醒自己還有哪些不足的地方需要改進,才不會迷失在掌聲中,感謝所有給予關注與支持的人! . 我們一起成為更好的自己! / #就是這Young#李怡潔#最平凡的奢侈 看了嗎?!看了嗎?!看了嗎?! 錯過了木有關係,快去YouTube 補回來! #LinkInBio . #life#liyijie#me#tv#tvprogram#documentary#encouragement#sma#spinalmuscularatrophy#勵志#公視#taiwan#grateful

Heute vor zwei Jahren haben wir standesamtlich geheiratet. Seither haben wir so viel gemeinsam erlebt: Freude, Abenteuer
1

Heute vor zwei Jahren haben wir standesamtlich geheiratet. Seither haben wir so viel gemeinsam erlebt: Freude, Abenteuer, Entdeckungstouren aber auch Trauer und schwere Stunden. Wir haben uns immer gegenseitig gestützt und Kraft daraus geschöpft. Ich freue mich auf alle weitere Schritte, die wir Seite an Seite zusammen gehen werden. #interracialcouple#interabledcouple#interraciallove#interabledlove#love#binational#couple#wheelchairlife#blackandwhite#spinalmuscularatrophy#spinalmuscularatrophytype3#weddingday💍

Heidi had an X-ray yesterday & her spine is looking awesome. It’s all settled now & so much straighter than before (it’l
39

Heidi had an X-ray yesterday & her spine is looking awesome. It’s all settled now & so much straighter than before (it’ll never be 100% straight but it’s an incredible difference) Her heart and lungs aren’t squished anymore and she’s generally more comfortable. Her scar is healing really well, so now we just gotta try and build her back up and try get back to some kind of normality. So glad it was worth it in the end. I’m hoping next year brings better things for Heidi. This year has been horrible for her physically and mentally. #spinalfusion#spinalmuscularatrophy#teamzebedee#zebedeemanagement#iamtitanium

Quick trip 👏🏼👏🏼.
.
#spinalmuscularatrophy #quicktrip #sydney #meeting #excited #excited #excited #thefuturelooksbright
0

Quick trip 👏🏼👏🏼. . #spinalmuscularatrophy#quicktrip#sydney#meeting#excited#excited#excited#thefuturelooksbright

Happy Friday.
2

Happy Friday.

Day 6 of Stitch's Christmas adventures. 
Stitch 626 jumped up on the Frozen2 advent calendar and had to open day 6 befor
0

Day 6 of Stitch's Christmas adventures. Stitch 626 jumped up on the Frozen2 advent calendar and had to open day 6 before Anna & Elsa! He got so excited when he saw it was #6! . #holidaymischiefwithstitch#stitch626#stitchontheshelf#elfontheshelf#frozen2#frozen#anna#elsa#olaf#stitch#disney#smalife#spinalmuscularatrophy#smatype1#smaawareness

“The world is best viewed through the ears of a horse*.” - Author Unknown *dog

Joey’s vocabulary is pretty good. He kno
2

“The world is best viewed through the ears of a horse*.” - Author Unknown *dog Joey’s vocabulary is pretty good. He knows his 5 toys by name, can find the cat when asked, will jump on the bed on cue. But my favorite phrase he knows? “Let’s go for a ride.” He makes himself at home on my feet. To him, a wheelchair means nothing but a relief for his lazy little feet. To him, my disability means only that I have a lap for him 24/7. To him, I’m perfect.

Zoe is doing so much better thank you all for the prayers. 🎗🎀🎗🎀🎗🎀🎗🎀🎗 #fightforzoe #Zoe #cureSMA #Spinalmuscularatrophy #
2

Zoe is doing so much better thank you all for the prayers. 🎗🎀🎗🎀🎗🎀🎗🎀🎗 #fightforzoe#Zoe#cureSMA#Spinalmuscularatrophy#SMA#DoGoodInDeed##enableawareness#givingback#gooddeed

A few cutie moments from our little Cozy girl.

Eating an ice cream cone, sitting up straight in her stroller, pony tail
9

A few cutie moments from our little Cozy girl. Eating an ice cream cone, sitting up straight in her stroller, pony tails & pig tails. She’s changing so much. 💓 #sma#smatype1#smaawareness#spinalmuscularatrophy#spinalmuscularatrophytype1#spinalmuscularatrophyawarness#spinraza#curesma#zolgesma#zolgensmainfusion#impossiblegirl

President Car Convoy Game