Why I’m Stopping Treatment For My Disease / Squirmy and Grubs
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- Опубліковано 29 сер 2024
- Shane is stopping his treatments of Spinraza and beginning a new oral treatment called Risdiplam! We share the frustrating process of the last few months, and explain how this new treatment became a reality for Shane.
Hannah and I absolutely love making videos for you. If you would like to support our work so that we can continue sharing our life and relationship with you for years to come, you can do so on our Patreon: / squirmyandgrubs
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PO Box 16411
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Intro animation made by Pinkietoons! Check out her Instagram page to see more of her awesome work: / pinkietoons
Shane was born with a neuromuscular disease called Spinal Muscular Atrophy that requires him to use an electric wheelchair. He is the author of several award-winning books, the President of a nonprofit organization called Laughing At My Nightmare, and a renowned public speaker who has performed across the country at places such as Harvard University, The University of Florida, The University of Connecticut, Princeton University, and many more.
Hannah just graduated from Carleton College, where she studied Sociology and Anthropology. Her future aspirations include attending graduate school and owning a goat sanctuary. She films and edits the “Squirmy and Grubs” vlog.
Shane and Hannah have been dating for 4+ years and living together in Minneapolis for 2 years. On June 15th, 2019 they got engaged!!!! Their interabled relationship often confuses people, because much of society still cannot fathom people with disabilities being involved in loving, intimate relationships. Anyone who watches these episodes will quickly see their relationship is just as “normal” as any other. Sure, Hannah helps Shane use the bathroom and brush his teeth, but those activities do not detract from the emotional, intellectual, and physical connection they experience together.
I saw the title and thought it meant Shane would no longer get treatment at all...so glad that's not the case
Oh my gosh! Thank goodness!! I haven’t watched the video yet, I was so scared
I thought the same thing and I was so sad!!
I love their click-bait bants titles. I know they do it but they still fool me every time! 😂😜
Most people thought the same.. I love these guys, but I genuinely wish they hadn't titled the video as they did 😞
@@KatieM786 one day it may not be, so.. I'm sorry.. I don't think that it was cool at all 😕
Shane and Hannah, could you please go back to including subtitles on your videos? I guess there have been less lately because you guys probably have too much work to do, but I'm deaf and it's one of the reasons I love your channel so much. Seeing how your channel naturally will attract all kinds of disabled people, it would be nice to go back to the subtitles to make it even more accesible.
Anyway, you guys rock! Lots of love, cheers and hugs. :)
I concur with deafdani. I'm also deaf and love your channel Shane and Hannah! I understand tho if time's too tight. 👍
Cheers!
Hi if you click on the three white dots on the upper right side and than click on caption and than click on English and that will add the subtitles to this video or any other videos
I turned my captions on. It's just a setting. 👍
@@luzrodriguez1214 True, but if you see "auto-generated" next to it, it means it has been generated and haven't been edited to be correct. Shane's voice, for instance, isn't being recognized that well at certain points.
UA-cam's subtitles are not good unless they set it up
I lost my best friend to SMA in 1997. The fact that there are treatments today make my heart so happy. David would be 35 now. I wonder what he would be like today.
Oooof this brought me to tears. I am 31 and I do not have a physical disability and it is important for me to remember how many people don’t get this amount of time. So much love to you and to David. ❤️❤️
I’m sorry for your loss, he is your guardian angel now
I'm SO GLAD that you've been able to move forward with the new drug.
My boyfriend had SMA and he died from respiratory failure... losing him was so hard.
So I am relieved that you will be able to have treatment going forward, Shane. It means a lot to me, being able to see the good things happening in your life, and getting to celebrate along with you.
I’m so sorry for your loss. 😢
So sorry for your loss
Please accept my sincere condolences for your loss. God Bless you❤️😢
💔
My condolences. Take care .
My daughter has SMA and she had the honor of meeting Shane and Hannah. We look up to you. She is so much like you. She's a very silly girl. Loves life and extremely determined to get what she wants. Thank you for sharing your story 💙
May God continue to bless your lives. 💐
Thank you for sharing your story 😊
You are such an amazing Couple. 🥰
@@PraveenSrJ01
g?? 😊u
God bless her! I pray she lives a long and joyful life. You are a terrific mother
Shit, treatments like yours should absolutely not be cancelled due to corona or anything! Thank goodness you found a new treatment, I hope everything goes well.
I never comment on videos but as someone that also lives with a chronic disease It is the worst feeling when you're in a situation where you can't access the medication that you need. I'm so happy that things in the end worked out!
Exactly during this whole shut down I couldn't get ahold of my chrons doctor not once and I finally gave up I'm in pain miserable and they don't care hell I dont think my drs cared when I seen them... I wish there was a cure for all disease! Xo hope your doing well.
KD Mcgriff fellow Crohn’s sufferer here. I hope you get some relief soon
I’m sorry you both have to deal with Crohn’s. My mom had it, and I have MS like her sister. Autoimmune diseases run in my mom’s family. 😟 Are either of you on Humira?
@@trailer_trash_Barbie I'm sorry dear...
@@youserguide I have had MS since 93
*time to get my daily dose of wholesomeness.*
This is so true, especially right now.
Amen Jesus loves you
Shane’s sense of humor and good cheer- despite daunting challenges, is inspiring. Hanna’s sunny personality-and extraordinary beauty-is the “icing on the cake”. I love your videos. May God bless you both.
I love the way Hannah looks at Shane. It's so obvious she is crazy for him. True genuine soul. ❤️😍
DaisyAggression - I was thinking the exact same thing. I could tell that she was getting emotional at a couple points in their conversation and it touched my heart how much she loves him & has that genuine concern. It has to have been so difficult waiting and with Shane not doing well. I’m so thrilled for them!
Yes, she's obssesed 😵
DaisyAggression My thoughts exactly! A relationship built on trust, respect and love.
Yes I just said the exact same above. I love watching them, especially to see that xxxx
Agree! Anyone who even suggests that their relationship is “fake” has no idea what love looks like in someone’s eyes.
i just need to ask, how on earth does one dose of ANY medicine cost $125,000. Totally disgusting.
Yep. Americans are only wealthy as long as we don’t need medical care. (Or child care, or mental health treatment...).
It’s crazy, I get sicker looking at the bills and insurance statements.
I have Multiple Sclerosis and prescription for that is almost $6,000 dollars for a 30 day supply..it has 60 pills in the bottle at twice daily..thank God I have Medicaid!
@@Liz11679 me too! Here in brazil we get all the treatments and medicine for free 🙏
Big pharma are crooks that’s why.
I know it’s not the same disease, but me and my kids lost my husband to ALS in Sep after a 3 year battle. Hence, me and my daughter following you guys just because a lot of the care and symptoms are similar. We stopped Radicava after only 3 months because it was so invasive. Lee actually felt it escalated his disease. You guys are awesome and your love is apparent.
Hi pretty lady with and smiley face. How are you doing today??
@@nicolassmith1278 troll...
As a European, the US medical insurance system never ceases to shock me deeply. I'm glad you found an alternative, but also horrified that neither of these drugs are available for free to you as a matter of course.
I have friends that live in Europe and are low income and the insurance in Europe is no different than the insurance in the USA.
@@PaperImagesArtStudio Yes it is, atleast here in Spain when you go to the doctor they dont ask for your income because healtcare is paid with everyone taxes.
@@PaperImagesArtStudio that’s not true. Just about every country in Europe has healthcare available to every citizen BUT we also have private insurance if you choose to purchase it. There are also public AND private hospitals. Again, we have the choice.
@@PaperImagesArtStudio I agree with your other respondents - as an EU citizen, you can even get free healthcare when you travel to a different EU country than your own. I have to wonder where your friends live.
@@jorgemr2178 you left out the part where you FINALLY get to see your doctor, because of wait times. The one of many flaws that comes with your “free” healthcare.
Picture Shane taking it like a baby bird and then getting that look he has when he has food in front of him. So happy things fell in to place so quickly. Prayers to you both
I literally can’t get over how funny y’all are. Glad I found you guys.
Love the way she looks at him. True love
I literally almost cried when I saw the title. I was like, no, what, and had to sit and watch right away. So glad it's good news! You guys bless me so much, I even look forward to singing along with your intro! Thank you for bringing the smiles!
@Citizens Arrest I know, but I also know that they've had problems getting Shane's Spinraza(sp?). I want good things for this precious couple!
Me too!! Bit of a panic for your regulars, you two! Lol 😂 phew! So happy for you Shane! So glad its enjoyable to take as well. I hope it heals what has been lost so you may just be able to walk. Here's hoping! 💜 ^_^
Watching at 4am because I was so worried! Couldn’t sleep 🙈
No medication should ever cost 125 thousand dollars per injection there’s no way that could ever be justified in my opinion that’s completely ridiculous
I get a medicine by IV every 6 weeks and the bill for it is around $10,000 and Medicare pays about $5-6ooo of it and my medigaps supplement pays the rest of what Medicare doesn't pay. I don't pay a penny. But for me it is the difference between being alive and just living in agony due to bad arthritis.
NO medicine should ever cost over $125 for a six month supply, whether you have insurance or not.....no matter what the medicine is. Yes, I know about paying for research and all that and I agree, but after they've gotten that back they shouldn't be allowed to LITERALLY Kill people.
No medicine should ever cost anything
@@squeezemyparticiple That's not very realistic is it ? What else do you think should be free, and I'm curious who is going to pay for it because someone has to in some way.
@@squeezemyparticiple who’s gonna pay for it then cause nothing is free someone has to pay for it
Oh man i really hope this new treatment goes well. I can't imagine the stress and worry of trying new treatments. It's making me think of when you talked about the feeding tube in your book and that whole process
Positive thoughts and support shoved your way!
They have a book? What's the name ?
@@ellaalpha979 two and they're working on a third.
Laughing at my Nightmare and
Strangers think my girlfriend is my caretaker. I definitely recommend listening on audible. I think they have an audible code too on one of their past videos
@@cassiemiddles oh okay! That's great, thank you very much I'll have a look
@@cassiemiddles" ...is my nurse." Not my caretaker
I enjoy seeing the love in Hannah’s eyes for Shane!
Pure, genuine and wholesome, makes me smile every vid 🤗
When you guys were explaining that getting the injections would no longer be possible, that broke my heart. But I was truly happy that you are able to get something that does the same thing AND is pleasant to take. Very happy for you Shane!
Hi lady. How are you doing today??
So happy for Shane, I can only imagine how frustrating it was. Hopefully the new treatment will do good, best wishes ❤️
I am so happy that you're receiving the new med orally and that it is working.that certainly makes things much easier.
Hugs and good energy 💪 your way
shoshanna fachima epidural injections suck, so any other way they can administer it would be so much more pleasant
@@Boredchinchilla most definitely
Wow Shane’s speaking has improved so much since pre-spinraza!!
Like 👍🏿 100 💯😊
"Shane your foot has always been able to move"
"....k....thanks everyone!"
That part made me laugh so hard
Best part
Me too
2019: On the 'Raza
2020: On the 'Plam
My thought exactly; he’s on the ‘Plam 😃
💖💖💖💖💖💖
Love that
Being English and in the UK I count my lucky stars having the NHS - the medical system in the US staggers me beyond belief when those who really need help don’t get it or have to pay insane amounts of money to get it. If your insurance company don’t agree to pay for the new treatment then there is something horribly inhuman happening. You guys have an English sense of humour and are a breath of fresh air. You sure you’re not from here? (UK) You’d fit in like you were made to be here!!!! ❤️😂
I am in the NW and I told my friend about them yday..
I said, these two have an English sense of humour... They're so in sync! Hilarious
I cannot express how happy my daughter and I are to learn this fantastic news! We're so happy for you Shane! And who doesn't like strawberry flavor, eh?
Right !?!? 😊💕🍓 Hope you and your daughter are well.. I was SO worried as well when i seen the title..
@Lesley Hughes wtf are you talking about?
SWEET JESUS SHANE DON'T GIVE ME A HEART ATTACK
I had two brothers who had Duchenne muscular dystrophy and a nephew, my brothers were 18 and 20 when they succumbed to this disease, my nephew was 23, as time and medical technology advance I am amazed at the strides in treating these diseases and am hopeful for a cure. I long to see this day for Shane and everyone else who is effected. Love you guys, I believe the future is good. 🥰
I can’t believe they could call Spinraza an “elective “ treatment. I have watched a few vloggers getting the treatment and all seem positive. Especially in the face of a respiratory virus, it seems that pulling a drug that can keep people breathing would be important.
I am very glad there is an alternative. And that you can take this at home. I so hope that you continue to find strength with this.
Exactly what I was thinking. If it keeps someone alive and healthy, how is it elective? At least this injection is guaranteed to work and keep him healthy, whereas coronavirus treatments aren’t yet proven to be effective so there is no guarantee there.
I agree. When I think of an elective treatment I think of botox and face lifts.
I think elective means not immediately life or death, cause I know cancer surgeries are cancelled too
Tenzin Tenzin 🤣🤣
Equally though, going into a medical center with respiratory concerns can be exposing them to the virus. It's a catch-22.
Don't scare me like that I almost had a heart attack ❤️
Me too 😞
Meet too!!!
Me too!!!
Ughhh, gaaahh - same! 🙏🏻 Phew!
Damn it Shane ... Scared me to death
So happy you don’t have to get the injections anymore! Praying the new treatment continues to work well. My husband has a spinal cord injury & y’all’s videos have helped us so much. Thank you for all you do. I just adore you both!❤️
"I do not feel the overwhelming sense of tiredness anymore." -Shane
👏👏👏👏👏👏👏👏👏👏👏👏👏
I know, isn't that amazing?!?!?!?! :D
Mazeltov ,Shane!! Great to hear.
YAY!!!!!!!👏👏👏👏👏👏YAY!!!!!!
So glad you found something easier and like it Shane. You two are a nice couple and i enjoy watching your video's about your life.
I want to say I have been a fan for a while. I am one if those anti maskers ....or I WAS until I watched a couple of ur videos. The one where Shane explains his disease and then says "wear it for me" that really hit me hard... it was like a light bulb went off. I will wear a mask in public if it may save just one persons life. I feel so guilty and sick to my stomach for being so stupid and yes, selfish... sorry guys😪 from now on I will forever be more thoughtful so thank u for this....
Thank you. Because I'm like Shane, I really appreciate that.
you're awesome!
It takes a big person to apologize .
I respect that !
You give me hope🙌🙌 good for you for realising your mistake
I appreciate your honesty.. it really takes alot for people to admit their wrongs.. thank you 💖
That's so nice! I'm a doctor here in Brazil (anesthesiologist), and I've helped with some of the spinal injections and sedation (in children) with SMA, when was still imported... super expensive for our reality here, only a few people could afford it... but since 2019, the federal government approved Spinraza for free, here in our public healthcare, called SUS (in English, it means, universal health system). They give for all people with SMA Type I... Types II and III are only if you show some improvement in 3 years of treatment, then you continue getting it... so cool... hope we have good news about this oral drug, and that we get it here soon... it would be so amazing... congratulations on getting the word about Sma out, and about having a full and happy life, no matter the difficulties we may face it... I've been watching all of your videos, and they make my heart so full... and also, you guys crack me up, you are so funny!! good luck on this new treatment! praying for you guys
Viva o SUS!
Um tapa na cara dos americanos!
Nice
SUS seja louvado!
Sempre que vejo saúde sendo negada aos estadunidenses eu fico com raiva e triste. Defenda o SUS!
That is wonderful that spinal injections are replaced with strawberry flavored liquid dessert. So excited for both of you! Awesome. Hope you continue on the road to health and maintenance.
Seriously! Plus not having to travel to get the injections anymore! What a win!
Yes. MAINTENANCE. Maintaining health and recovery through a disease/disability is a common comment. My mom has awful rheumatoid and her doctor always says “praying for more than just maintenance, but progress this time”. How about you stop to take a second and think “Is my comment KIND and is my comment CORRECT?” before you eat someone. Damn keyboard warriors trying to cut down fellow humans for ANYTHING they can find. 🙄 go read a book instead of UA-cam comments that are above your own head. 👍🏼 sending love to Shane, Hannah and the lovely original commentator who wished them both WELL instead of being a prick. 🥰
Not a bad trade.
Seeing the love you have for each other is awesome. The fact that you can joke about walking and moving your feet is amazing, your outlook on your situation is inspirational. I love you guys.
Your “hello, hello, welcome to the show,” song is growing on me; I find myself looking forward to Shane’s voice. I love you guys’ conversations; every couple should have such give & take in their relating. The way you guys listen to each other; there is no interrupting and correcting. It took me a while of watching your videos to get it but now that I do, I love it; it is uplifting. I am so glad to hear your good news! Yay! I am so happy for you!
You two make UA-cam worthwhile for me. I can't remember how I came across you but I've bought your books, your merch etc (Inclusion Matters) which no other UA-camr has ever inspired me to do. Keep doing your thing ❤
The look on Hannah's face as Shane talks about his treatment adjustment is pure love.
Hi pretty lady with a smiley face. How are you doing today???
The American health system angers me. The whole "will insurance cover it or not"-worry is upsetting. I'm happy you are getting a new drug and I really hope they work! ❤️
Jesus loves you :/Romans 5:8 but God Demonstrates His Love for us in this while we were still sinners Christ died for us
@@jairchavira8212 What the heck does that have to do with anything?
Melissa must be a millennial liberal
@@gregmyall2189 And you are assuming the "liberal" from the bible quote or "christian vlogger" name? maybe reconsider...
Robert B My sister and her husband pays $1000 per month and still have a high deductible.
So what ever keeps you safe and healthy.
“We made this title so you would watch this” if there wasn’t already a reason to love you two 😂
Y'all I just watched an interview with Shane from seven years ago and he talked about how someday he was going to a find a girl who didn't care about his condition and stuff. I'm still kind of new to watching the channel but I obviously picked up that they're getting married and idk it just made my heart feel whole watching those videos that were made so far apart yet still connected
If I remember correctly, Hannah saw that same video and thought he was interesting and funny and reached out to him by email and that’s how it all began!!!
THEY’RE MARRIED! Yyaaay!
Yes, Real Love will endure all. And u will still be in love with her.🔥🔥🍍🍍50
One time I want to see Hannah sit slightly in front and in Shane's line of sight so he can look at her and we can all comment on HIS loving gaze for once! :)
Underrated comment
“Icing on the cake” I’m so happy for you both. Sending much love and healing 🌹
I have mitochondrial disease and was literally almost dead when my mom came across a supplement called Ribose! It has saved my life! I‘m much stronger and have been able to walk again without a walker or wheelchair!
So happy for you!
thats amazing!!! science is truly the best
Sandra McMullen Thank you! ❤️
Matthew Klein it truly is! Thank you!❤️
Sandra McMullen thank you! ❤️
OMG congrats on two years, I'm so glad you guys stuck with it, I love watching your content.
Shane your wife is a God send an angel,she really loves you so much you can tell, bless you both!!
I had to replay the part where Hannah mentions the price of the Spinraza injections just to be sure I heard it correctly. That is criminal!
Un-fricking believable, yet I'm not surprised. "Big Pharma" is a racket.
You should look at the cost of the cure, the most expensive gene therapy treatment in the world
dania wait, there is a cure?!!
Same!
I replayed that like 3 times...that is absolutely crazy
@Barrier Free Fitness,
Criminal? You're an idiot.
What exactly do you know about researching medicine, creating it and pharmacology in general?
You are not competent to say a word about the cost of medicine because you have ZERO clue what goes into producing medicine and why it is priced as it is.
I admire the strength you two have during these times and I’m so happy there’s another option available for Shane! I wish you all the best💗
Shane, thank you so much for living such an inspirational life!
I love the intro when Hannah goes ...”nope.” 🤣❤️
Hi guys! I love following your journey through life together. You are such an amazing cute couple & hilarious. This is such good news all around! Yay! What a blessing for this treatment to be so much easier and the fact that it’s actually starting to be beneficial is amazing! I could tell how emotional of a journey this has been for you both. You are so strong & I love the positivity. I wish you guys the very best ♥️
Hey
This is great news! I'm so happy they are still improving ways to help SMA. You both look and sound relieved. Love this! I hope you continue to feel better and continue to feel improvement!
WOW I AM SO EXCITED !!! I had no Idea this new treatment is coming. I am a Physiotherapist and hope for the best for all my patients and you guys!!! :)
It doesn’t seem right that “elective” procedures include electing to save your life, and basic muscular function. So glad there are other treatments for you.
Yes, I'm not entirely sure how they come to the idea of what is elective and what isn't. Pretty sure improving quality and length of life shouldn't be "elective". Getting braces or plastic surgery is elective.
I agree! That’s ridiculous to me as well.
@@owleyes71 even getting braces isn't always elective as shifting teeth can change normal jaw development and function to eat and talk. also plastic surgery can be life saving to burn victims
I can't tell if you're arguing with me or agreeing with me haha
@@owleyes71 They're just saying that it shouldn't be up to anyone what is "elective".
I am getting a breast reduction, considered "elective" and I dont think it should be.
I never knew "interabled relationships" were a thing, until I found your channel. Because no one has ever talked about it, it has never even occurred to me that disabled people can find someone they love, as equally as anyone else could. Thank you for educating me, and many more, because I never would have known about the reality of his condition and it reminds me that anyone can find love and live a happy life. Keep educating us and being you! I love watching you guys and hope the best for you
Agreed. It has made me more willing to date someone with a disability. Before I would not have, not because of the disabled person but because of my own shortcomings, but now I realize don’t have to be a saint or martyr or have perfect patience or be a 24/7 carer.
Why not?
I never thought about it much but l always assumed it's possible
Especially when the disability is only physical
We aren't just our bodies
The body is the container of the mind
And when you like the mind, you like the person so you like everything about them, also their body
But the mind comes first
Otherwise it's just attraction not love
Wow that seems pretty wildly naive to never have it occur to you that disabled people could find love. Weird to me. They are human beings who need and want love like we all do.
@lime& salt exactly, just their body is different
How can one think that if one is born in a different body they will never find love?
Idk
Must be superficial
@broke adair I mean you could get (hopefully not) in a car accident and lose the use of your legs or even your hands
Would that suddendly mean you're suddenly no more part of the human race and can't be considered as a partner by anyone anymore as if you were suddenly an inanimate object?
Anyone can be born or become disabled
I never ever assumed they can't
There are also people with Down syndrome who find love
I assume this would be a little bit harder but in the end what you love about a person is not always their q.i. or if they can do abstract math
Btw thanks for your honesty and it's good you see things differently now
yeah im disabled with spina bifida and ive always been low on confidence about finding someone who isnt disabled and still loves me even though i am because mentally i dont see myself as disabled
When I say my heart dropped when I read the title... but I’m so happy you have an easier and safer option! I love you guys!
Shane and Hannah, so happy you found a treatment that Shane can get without having to go so far for treatment. I wish you both the best always. I think you are one of the sweetest couples I have ever seen, and I love your channel. many hugs your way!
So happy for both of you! Shane, you already sound more energetic and clearer when you speak! This is really great. Couldn't happen to a nicer couple!!
Sending my prayers and love for the both of you
Shane. You're such an inspiration to everyone that may have SMA. Youre a strong person and i am proud of you for not giving up on everything. Keep your head up and smile!! 😊 your life is amazing
Hi pretty lady. How are you doing today over there?? And how is everything going with you over there??
You guys are so laid back and I love that 💕💕
That’s so amazing! But I will miss when Shane talks about being “on the razza!”
I have searched my whole life for just a drop of the love and respect that the two of you share. The appreciation and joyful banter is the best thing ever. Shane, I'm so happy for you and Hannah both. This drug is sure to be amazing for a young man like you. I can see the joy Hannah feels in her heart that things are getting somewhat easier for you. Love you both. ♥️♥️♥️
Dude! I was almost in tears when I read the title and the. You said you really were stopping the spinraza! I’m so glad that you now have a tasty treat instead of needles!!!
Oh my ! You have such a wonderful sense of humor . I just now came across y’all . Take care
So incredibly happy for you both! Praying this med is even better.
Wow I'm so glad Shane can take the new meds. Yall had me in tears becuss they moved yall to another hospital and discontinued ur old meds , but thank goodness yall got the new meds !! GOD BLESS YALL , stay positive love u guys
I can see that your speech is more "defined" . I am so very happy to see this development. Thank God!
First, I have to tell you, I love you guys! Your sense of humor is awesome, and your courage and positivity is amazing. I am so happy that Shane doesn’t need those injections anymore. I had an epidural when I was in labor, and I can’t imagine having to go through that every four months, in the neck, no less. You two ROCK, and I wish you all the best! ♥️
Love watching the way Hannah looks at Shane. The love is so clear. It's the connection between you guys that keeps me watching your videos! Wishing you guys the best of luck with this new med. Glad things seem to be working well!!
Nobody should ever have to pay for medicine that keeps their body in tact.
What a stupld thing to say. Who's going to pay for it? The rocks or trees? If you don't pay for your own medicine, do you think it's going to fall out of the sky for you?
Oh I see.... You just want all your neighbors to pay for your medicine. So instead of you paying for your own misfortunes in life, somehow I am now obligated to pay for your misfortunes in life.
@@karozans Guess that would change if thats were you sitting there.
@@gollese Nope! I am a Libertarian. I refuse to use violent force of government to forcibly take from someone else in order to fund my life.
I would beg and plead for someone to willingly help me, but if they decided not too, then I guess I'm out of luck.
@Ryan Murdock Creating a government body that uses violent force to take money from someone else to give to another person doesn't make you compassionate and it doesn't make you noble for helping someone else. It makes you a filthy tyranny.
I help people when I can out of the kindness of my heart. I don't set up a system that steals money from other people so that I can feel good about myself like you do and pretend how good of a person I am.
True compassion, helpfulness, and nobility comes from voluntary actions. Fake virtue signaling comes from voting for politicians who promise to "take care" of other people for you.
You two are so freakin’ cute!! I watch you guys every night before I go to sleep. The pure peace of your relationship is so relaxing to me!! I suffer from bipolar 2 disorder - so having you guys on in my headphones allows me to have positive dreams instead of my usual night terrors. Thank you both for your posts and always the positive attitudes!!! I realize everything isn’t “happy”, but you both remind me that I CAN defeat my disease and fight to live a “normal” life...not sure what is considered “normal”, but I define it as even...a constant state of well-being. Thank you both so much!!!!
I’m so happy you guys found something else !!! Sounds like you are happier and it’s going good! At first I was worried like oh no wait what!! Lol ! I’m happy for you both. Such a strong, amazing, inspirational couple !!! Love watching ur videos ! Shane you rock
I love you guys. Love Shane’s sense of humor. Love the way
Hannah loves Shane’s. I can see the love you guys have for each other makes me happy. God bless you guys. Glad you feeling better shane.
Shane and Hannah you both are an inspiration. I told u in a earliet vlog that my Nephew Eric passed away from complications of Duchenne Muscular Dystrophy just after his 18th birthday. I'm glad new treatments are available to help. I am a former healthcare worker of 35+ years and have always felt insurance should never b a factor when someone can or cannot pay. If it works,helps ..whatever give it to them. I wish these treatments would have been around for our dear Eric. Bless you both. Much love and blessings from Kansas city Missouri. 💙💖
Oh Hannah, I love the way you look at Shane ❤️You’re a hilarious couple and a breath of fresh air. You crack me up xx
Compassionate use!!! YES! I'm so happy for you 🥳
I used to do spinrazas digital marketing and I have learned so much about spinraza, zolgensma, and risdiplan (Roches experimental drug) I'm glad you're moving onto something else that gives you more hope.
I learned so much about the procedure, the process to get the procedure, the fdas approval, the cost, oh my gosh the cost. There were chats about how inconvenient the procedures were, and they could improve it. I am so sorry this didn't get figured out. But I'm glad again you are moving on ❤️
Ohmygosh Shane’s effort to walk and Hannah’s reaction to it was hilarious! You guys are amazing. I just love how easily you can laugh together. I’m happy to hear that Shane’s new treatment can be taken at home, taste good ( huge bonus for him!) and most of all helping him feel better. No more spinal injections! Great news!
So super happy that you’re able to find a replacement drug. Hoping FDA comes through soon and your insurance approves it too.😊
I get compassionate approval for a drug in the U.K. (that is used in Sweden for my disease, but not in the U.K.) my professor was amazing at getting approval on compassionate grounds. Glad you got it SO quickly!
But what about Hannah’s pizza while waiting for the injection to be done?? 🤭🥺☹️😱
😂😂😂 I know!!!!
@@SquirmyandGrubs I guess, you can always eat pizza everyday? 🍕🙄😏
I feel for you so much! I have a herniated disc one my neck that causes me pain I usually get them every 3-4 months well when I was ready to get one in early jan my new insurance told me I needed a new mri and physical therapy before I could get one. Well after all that I was into early March then the virus hit. Well after waiting almost 10 months since my last one I’m getting one on the 19th. My pain level is a 50 right now but I push through. I’m so glad your getting an easier treatment. Prayers for you and Hannah 🙏🏼
You two are the cutest.
Donna Barr - I live in Seattle and just had amazing disk replacement surgery between C5/6. I mention Seattle because it is a fairly new surgery and recommend a surgeon who has done many of them. If you’re interested his name is Dr Daniel Lazar at UW :) I basically have a silicone disk and feel like myself again!
So happy for you that there was an alternative.
I love you guys ... Youre love for one another taught me how to live a better life and teach me more about sma I love all ur videos and im so happy that y'all are happy and Shane gets his treatment I have been a fan from day one but i hardly comment. Just letting u know that I love you both and pray for you guys and thanks to you im a better person inside and out thanks
The change in treatment happened sooner because you become part of a clinical trial. As an FDA guinea pig myself, I wish you only the best. Godspeed to you both. (One would think Spinraza becomes more complicated as scar tissue builds-up at the injection site.)
There's sumpin about you two that just makes me happy!!!
New viewer here. Subbing today cause I've fallen in love with the channel. The dynamic you guys have is adorable, but I REALLY love how you guys contribute to educating us how people with disabilities live normal lives. You guys deserve the best
I'm so happy you are receiving a treatment. And one that tastes decent. Whenever I'm sad I watch you guys. Shanes Dad jokes and Hannah's true heart cheer me up.
You guys are the cutest couple! Wishing you both the best.
You two are so amazing and loving. Keep doing what you do.
PLEASE, PLEASE make t-shirts with "Nope"!!!!! I love you guys soooooo much!
I would buy one!
They have them in their merch store. Just search for squirmy and grubs merch. I don’t know the link off hand
@@sinjon Thanks! I found them!!
@@custardcream thank you so much! I will look for them.
Best wishes for you two guys! you can do it Shane!
So glad and relieved you have an alternative medicine! And no need for spinal injections! Best of luck and health! Thank you for continuing to highlight issues with our healthcare system.
Shane: Oh look my foots moving!
Hannah: 😒🙄 Shane your foots always been able to move!
Shane: oh..
Classic!! I love their humor together. I love how Hannah looks at Shane with such adoration. I love their love!
Lp
I love you guys
I'm so happy for you! Those spinraza injections look terrifying, so I'm glad there's a safer (and tastier!) option for you now!