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 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. ❤️❤️
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 💙
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.
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?
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. :)
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
@@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.
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
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.
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!
@@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
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!
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! 💜 ^_^
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 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?
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.
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!
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!
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!
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.
@@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.
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 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!
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. 🥰
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!!!!
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!!! :)
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.
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!!
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!
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.
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 TH-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. 🥰
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!!!
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. ♥️♥️♥️
Excellent news re Risdiplam. I have just had the assessment for the early access scheme in the UK as it is still to be approved by NICE over here. Have just started vlogging my own journey on TH-cam. Fingers crossed I get the go ahead for the treatment. Been waiting for over 40 years for something like this. Excited and nervous. Love you guys. Love your stories and can always relate to them. Love your sense of humour xx
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 ♥️
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!!!
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!
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. 💙💖
You two make TH-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 TH-camr has ever inspired me to do. Keep doing your thing ❤
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!!
I love your videos... BUUUUT: I.WANT.TO.SOB.ABOUT.THE.COST.OF.THE.MEDS! You 2 have such great attitude! As a 73 yr old disabled woman, I KNOW how difficult it is to locate programs such as YOU 2 WERE ABLE TO FIND that covers the cost of Shane's medication. You BOTH are "AMAZING INSPIRATIONS" through presenting your videos and glimpses into your life together. THANK-YOU for showing that profound DISabilities ALSO can be profound ABILITIES. You 2 have a fun relationship despite the challenges. The event of your paths converging is DIVINE WILL. Thank-you for sharing your disease and treatment.... and the challenges with insurance, etc. You give HOPE to those who are in the midst of navigating the hoops of insurance coverage!! The best part of this video is that your medicine tastes like a Strawberry dessert!! BONUS!! CELEBRATE everyday, as you do, and again, THANK-YOU for sharing your CELEBRATION!!
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
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
That's such good news! So happy for you both. Honestly, I see & hear a difference. Why does watching 2 people, I don't really know, worry me?? Love you guys!!💜
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
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! ♥️
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 ❤️
So I never comment on videos, and I don’t know that you guys will even see this, but you two are my favorite part of TH-cam. I look forward to your uploads every week, and you guys help relieve my depression with your witty banter and pure love for each other. I’m ecstatic that Shane has a less painful, more accessible treatment for his SMA! Much love to you guys!
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!
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!!!! ❤️😂
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! ❤️
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.
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.
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.
Im so happy for Shane and praying for a remarkable outcome with the new treatment!! You both are so amazing and inspirational..thank you for sharing ❤❤❤
Shame and Hannah, you both have such beautiful attitudes and humor. I found you today and am binging, learning about your disease Shane. And learning about you both. ❤
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
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! :)
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
omg that's amazing info! i'm beyond impressed. I'm surviving covid with minimal therapy and psychiatry and i had to get a root canal but it's nothing compared to what you deal with and your positivity is infectious :) super props to you guys.
@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.
Shane your speech seems improved, too. It is such great news that you have a new treatment that isn’t scary and dangerous, and is now easily administered from the comfort and safety of your home. Miraculous!
just wanna let you know that in the past i didnt understand your speech as well shane, now since you started the new meds i can understand you fully! even i could see a difference in you! so happy for you! you deserve to have your health. and to be taken care of ! so happy you got it and its working
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....
Okay, you got me... was expecting to write a much different comment if in fact you " stopped" treatment. You have no idea how much you remind me of my niece, God rest her soul, who also had SMA. What an inspiration she was, and I also see that in you as well. Take care. Be safe.
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 .
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 😕
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
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
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
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.
TH-cam's subtitles are not good unless they set it up
*time to get my daily dose of wholesomeness.*
This is so true, especially right now.
Amen Jesus loves you
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
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.
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 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 🙈
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.
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
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 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?
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...
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.
"Shane your foot has always been able to move"
"....k....thanks everyone!"
That part made me laugh so hard
Best part
Me too
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.
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.
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!
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??
I enjoy seeing the love in Hannah’s eyes for Shane!
Pure, genuine and wholesome, makes me smile every vid 🤗
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.
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 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.
OMG congrats on two years, I'm so glad you guys stuck with it, I love watching your content.
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 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💗
SWEET JESUS SHANE DON'T GIVE ME A HEART ATTACK
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!!!!
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!!! :)
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.
Wow Shane’s speaking has improved so much since pre-spinraza!!
Like 👍🏿 100 💯😊
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!!
So what ever keeps you safe and healthy.
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!
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 TH-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.
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
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???
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!
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. ♥️♥️♥️
Excellent news re Risdiplam. I have just had the assessment for the early access scheme in the UK as it is still to be approved by NICE over here. Have just started vlogging my own journey on TH-cam. Fingers crossed I get the go ahead for the treatment. Been waiting for over 40 years for something like this. Excited and nervous. Love you guys. Love your stories and can always relate to them. Love your sense of humour xx
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
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!!!
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!
Hey guys hope you both safe and happy, much love from the UK ❤❤
"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!!!!!!
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. 💙💖
I love the intro when Hannah goes ...”nope.” 🤣❤️
You two make TH-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 TH-camr has ever inspired me to do. Keep doing your thing ❤
“Icing on the cake” I’m so happy for you both. Sending much love and healing 🌹
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!!
Oh my ! You have such a wonderful sense of humor . I just now came across y’all . Take care
I love your videos... BUUUUT: I.WANT.TO.SOB.ABOUT.THE.COST.OF.THE.MEDS!
You 2 have such great attitude!
As a 73 yr old disabled woman, I KNOW how difficult it is to locate programs such as YOU 2 WERE ABLE TO FIND that covers the cost of Shane's medication.
You BOTH are "AMAZING INSPIRATIONS" through presenting your videos and glimpses into your life together.
THANK-YOU for showing that profound DISabilities ALSO can be profound ABILITIES.
You 2 have a fun relationship despite the challenges.
The event of your paths converging is DIVINE WILL.
Thank-you for sharing your disease and treatment.... and the challenges with insurance, etc.
You give HOPE to those who are in the midst of navigating the hoops of insurance coverage!!
The best part of this video is that your medicine tastes like a Strawberry dessert!! BONUS!!
CELEBRATE everyday, as you do, and again, THANK-YOU for sharing your CELEBRATION!!
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!
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
That's such good news! So happy for you both. Honestly, I see & hear a difference. Why does watching 2 people, I don't really know, worry me?? Love you guys!!💜
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??
Sending my prayers and love for the both of you
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! ♥️
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 ❤️
So incredibly happy for you both! Praying this med is even better.
So I never comment on videos, and I don’t know that you guys will even see this, but you two are my favorite part of TH-cam. I look forward to your uploads every week, and you guys help relieve my depression with your witty banter and pure love for each other. I’m ecstatic that Shane has a less painful, more accessible treatment for his SMA! Much love to you guys!
2019: On the 'Raza
2020: On the 'Plam
My thought exactly; he’s on the ‘Plam 😃
💖💖💖💖💖💖
Love that
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
This is such exciting news, Shane! I am so happy for both of you. ❤️
That’s so amazing! But I will miss when Shane talks about being “on the razza!”
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!
Shane your wife is a God send an angel,she really loves you so much you can tell, bless you both!!
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
“We made this title so you would watch this” if there wasn’t already a reason to love you two 😂
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.
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.
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.
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.
Im so happy for Shane and praying for a remarkable outcome with the new treatment!! You both are so amazing and inspirational..thank you for sharing ❤❤❤
Shame and Hannah, you both have such beautiful attitudes and humor. I found you today and am binging, learning about your disease Shane. And learning about you both. ❤
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
You two are such an inspiration. I really love the chemistry between you two.
Shane, thank you so much for living such an inspirational life!
There's sumpin about you two that just makes me happy!!!
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
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
Compassionate use!!! YES! I'm so happy for you 🥳
How life changing to have your treatment so much more accessible👍❣️Prayin its long term help for you Shane.
omg that's amazing info! i'm beyond impressed. I'm surviving covid with minimal therapy and psychiatry and i had to get a root canal but it's nothing compared to what you deal with and your positivity is infectious :) super props to you guys.
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.
Shane your speech seems improved, too. It is such great news that you have a new treatment that isn’t scary and dangerous, and is now easily administered from the comfort and safety of your home. Miraculous!
You two are so amazing and loving. Keep doing what you do.
You guys are so laid back and I love that 💕💕
Very good that you are not stopping treatment altogether as that would be bad x glad this other treatment is working out for you x
You have an amazing and positive outlook on life. I can't help but to feel that energy and I'm starting to have the same outlook. Thanks
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.
just wanna let you know that in the past i didnt understand your speech as well shane, now since you started the new meds i can understand you fully! even i could see a difference in you! so happy for you! you deserve to have your health. and to be taken care of ! so happy you got it and its working
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 💖
Best wishes for you two guys! you can do it Shane!
Okay, you got me... was expecting to write a much different comment if in fact you " stopped" treatment. You have no idea how much you remind me of my niece, God rest her soul, who also had SMA. What an inspiration she was, and I also see that in you as well. Take care. Be safe.