My Life Expectancy Has Changed [CC] / Squirmy and Grubs

[@redbloodedamerican2743]

“Atrophied little giraffe boy” the fact that she can say this and they can both laugh, means they have completely come to terms with reality and still love each other. That’s real.

[@ivonnegonzalez556]

Pure love ❤️❤️

[@MrsP474]

Isn't that a kinda disrespectful comment for her to say though?

[@strangeshit3378]

MrsPolidori it depends on if you're joking or insulting and depends on how the person takes their comment.

[@felicityaeh]

MrsPolidori It would be disrespectful for a stranger to say it to him, or a mere acquaintance, but someone he has a relationship with (in this case romantic but any relationship really) will know his limits and his sense of humour in regards to his disease. She knows what jokes are acceptable, which is shown by him laughing.

[@MrsP474]

@@felicityaeh I understand that. It's just personally I don't think I would say something like that, even if it was his sense of humour.

[@Samanthapants0077]

You guys make my heart feel good. My boyfriend just died November 13. Your videos are helping me cope. I don’t know how, but they are.

[@MOOMOO2728]

Samantha West I'm sorry to hear about your lost. I'm sure he is there with u. ❤️

[@Samanthapants0077]

lee bags awww thats so kind of you thank you very much 😇

[@DogsGoWhat]

I’m so sorry ❤️🙏

[@ashleyscout4848]

My heart is with you

[@enxo3995]

I know you don't know me but i know your pain very well, my DMs are open and i'm wishing you strength.

[@honeylis7]

People look at people like Shane and ask, "How do you deal with knowing you're going to die?" and things like that, when.. we're all dying. Every day. You don't know what YOUR life expectancy is, either.

[@fixitallpaul4847]

I was at the peak of physical fitness at 52. I leaned back in a chair with a good stretch. 1/2 hour later I was in the ER having a collapsed lung. You really dont know. The how is irrelevant. Its the when that has us all.

[@shaylacrossland1475]

@@fixitallpaul4847 That's so scary!! I'm sorry that happened!!

[@fixitallpaul4847]

@@shaylacrossland1475 Scary was when they called a code blue on me. My collapsed lung was crushing on my heart. Never had a bad day since haha

[@elamorvencera7247]

My grandmother used to say: "you'll never know the day nor the time".

[@cmaggie5748]

We're all gonna die. Just part of the life cycle!!

[@timw6689]

Shane, I literally never comment on KZbin, but you are a damn inspiration. Your courage, honesty, and positivity are really moving. I wish you and Hannah the very best!

[@tammytruthout8465]

Tim W I feel the same way. If your mom is a strong leader, basing decisions on science. She’s awesome!

[@draganvujatovic5915]

@Maddeline Joa It seems real. Shane is really funny, confident and deals with his problems like a man. Many girls would still reject him because od his disability, but not all of them.

[@AvacadoYam]

@Maddeline Joa Just because you believe something is "against human nature" doesn't mean that it won't happen. There's mutation and diversity. Things change and not everyone is exactly the same. If everyone had exactly the same thoughts and decision patterns as everyone else, then you wouldn't be making such a comment to someone else and neither would I to you. Also, you mention life not being black and white, but if you actually think that, how are you so sure of your correctness of this being fake instead of considering trusting the two people actually involved in the relationship themselves.

[@etherealessence159]

Yes!!

[@shateciah]

@Maddeline Joa what money does he have that makes you think that hannah want?😂 I just find it funny.

[@cro9909]

"It's not a bad thing, it's just a big thing. And big things tend to take up a lot of brain space with their bigness." So much pain and suffering in my life could have been avoided or dealt with in a much healthier way if I was wise enough to see and understand this. I'm honestly shocked. I have to start seeing things more as they are and less as they feel. Thank you for sharing this.

[@micalah8282]

Thank you for this comment. Goodness. I'm taking a screenshot to remember and refer back to this.

[@Clemsterful]

@@micalah8282 I just did the same thing ...wow

[@merncat75]

I can relate 100% Chris

[@floraelizabeth1589]

If I could LOVE this I would. Thank you Shane and chris Rogers for your words.

[@floraelizabeth1589]

Omg I just now read the other comments. I screen shot it as well to keep.

[@fishcanon8141]

I can see why she loves you. You’re such an articulate, intelligent, sweet, loving and cute guy! I wish the best for you guys! Xxxx

[@Ant-fe7ku]

cute? Hell no! Adorable? HELL YEAH

[@clydefloyd8751]

@Seckswithatoaster what the 😂

[@santtunen8722]

I know right!! Shane and Hannah are meant to be, saw it in the first video I ever watched of them. And I am glad I did. ❤💕💖💓🌺🌹🏵

[@ABo-jr8pg]

Don’t forget hella sarcastic

[@mal4842]

She flirtin smh

[@summer_poems]

"It's not a bad thing, it's just a big thing..."' wow, that really resonated with me and re-regulated so many things inside my head. A lot of our fears are not a bad thing, it's just big, and we have to figure out how to deal with it all. I commend you, Shane, for your intense vulnerability and honesty throughout this whole process. Sending you much love and support. xoxo.

[@klauspendolo1393]

“I was gonna live as hard as I could, and love as hard as I could”....you got me there Shane. You show so much courage! ❤️🙏

[@Ego-de4dt]

I love that Hannah takes walks. I love that she takes time for herself. Refreshed and ready. I admire that. Not many people do that ❤️ love you guys!! I am binge watching you guys xo

[@Branman345]

My grandma was like that with my grandfather when he had Alzheimer’s it was a tough thing to deal with but she had to do exactly what Hannah does. She needs to for her own mental health and overall health.

[@lindsaysimplyliving803]

@@Branman345 Shane needs free time, too.

[@mar2d258]

they both need to take time for themselves. I can't imagine what it's like to have something completely consume and dictate your life, for both of them. they deal with it on opposite ends of the spectrum. I think in that situation you have to make time for just yourself or it would become all consuming and could even potentially make one resent the other.

[@michaeladelong7315]

I think that's the only way this relationship could remain healthy. Taking care of someone full time can be draining and Hannah having self care for herself is so is imporant

[@aryndreamers1558]

Your Ego ;

[@Arabica]

Roasting each other is actually healthy in a loving relationship, it’s because they’re cherishing each other’s little quirks and forming a special bond and insider joke that outsiders can’t do, it’s something special in their own little world and exclusive to them. It shows “hey, I recognize your flaw/quirk and I love you for it.” It’s a real rawness that is actually healthy for relationships and relationships without jokes and fun don’t last. This one will forever. God bless them

[@clydefloyd8751]

Huh, never thought of it this way...

[@livingsmall7122]

Beautifully stated...

[@jamie.k.nakni817]

Arabic , YOU GET IT!!!!! Not many people do! This is they type of relationship my husband and I have. We are constantly ribbing each other. Life is hard and this is how we lighten things up and stay sane. It works well for us! We just hit our 21 year anniversary earlier this month! We are best friends, not just lovers. Sure, we have arguments, occasionally bad ones, but we talk it out, straighten up, and get back to being silly and loving!

[@missgibbonsx2376]

Yes Arabic, unless someone is in a relationship like that, they can't understand.

[@missgibbonsx2376]

@@jamie.k.nakni817 exactly! 💜💜 14 years here! 🙌

[@TenThumbsProductions]

“Big things take up a lot of brain space with their..... bigness.” A light hearted yet very very deep observation.

[@kimflores5]

Y r d bl

[@sandradillon7923]

What a beautiful way to look at this situation.

[@kimmie965]

i am so sorry you both have to go through this

[@kimmie965]

@@josephinepeyton3044 what

[@josephinepeyton3044]

@@kimmie965 I'm sorry that was not a comment.

[@user-xl5sv1kv3k]

You’re more of a man than I’ll ever be. You are a freaking titan! Don’t know y’all but I love you both! Much love from North Carolina!!

[@sydney5640]

yea

[@RileysFilms]

'the slightest of mistakes could seriously damage my... Aliveness' 😂😂😂

[@Johanna040713]

I would say aliveness is one of the most important things in one's health :D

[@alexrye4678]

Not Funny 😂

[@GaudyGotti]

i felt that though😂

[@criskringle5227]

Hes also gonna live as hard as he can... hes making big changes hes gonna get up off hes ass n make something of himself..not like before laying around doing nothing.

[@KaylaBrown-uk5ib]

You asshole!!

[@nikoleta5925]

I am from Greece. There is a little boy, almost 2 years old that suffers from the same disease. Greek people, make a big effort to gather 3.000.000 Euros so that he can travel abroad and have the same treatment . We are almost there... I hope everything goes well for you.

[@maryp3052]

Is there a gofundme?

[@nikoleta5925]

@@maryp3052 We have gathered the amount in just a few days. It was amazing! The boy traveled abroad. He is home now and he is better.

[@maryp3052]

That's awesome!

[@nikoleta5925]

@Faris yes. It is Incredible how can people achieve things when they all fight for the same purpose. The boy of course has still a long way but it was a big step and success. If only love was all over the world , everything would be easier.

[@MissedGamer]

I have the same disease and my country doesn't support me to get treatment. But shane and hanna really make me believe that if i have SMA i can live a happy life even if i am like 20 or 30 (right now i am 15) and it really makes me happy and i wish them happy and beautiful life.

[@mekadoe5902]

The love Hannah has for you brings tears to my eyes. It's so real, it's not about looks, sex or money. It's purely just the love for you being you.!

[@pamelaroach1516]

@ape shut the fuck up.not everything is about sex moron.

[@cherylparrish2170]

But he Is cute, extremely intelligent and that is soooo sexy!

[@tinablackwood8230]

Amen!!!

[@tinablackwood8230]

@@monke4028 ur just JEALOUS !!!!

[@Atom00000]

@@monke4028 jealous loser 😂😂 you're bagging on this guy because his girlfriend is way hotter then any girl that's even looked your way. You know what's a ugly trait, your personality.

[@sarakrueger8209]

I watch your channel because my angel brother passed away last year from DMD. Duchenes Muscular Dystrophy. Your sense of humor, intelligence, the energy you have that brightens every room, and that smile that never leaves your face is everything Brandon was. Nobody will ever have the ability to bring me intense happiness and joy the way my baby brother did but, you both get pretty damn close. I love you guys SO much. ❤️

[@abilevitt3334]

❤️❤️❤️

[@muneca913]

You remind me so much of my brother 😭😭😭 he passed 7 years ago from muscular dystrophy! He was just like you! Out going and smart and everyone just enjoyed him! May god bless you!!!!

[@clayslay1554]

Hope you're better now.

[@HawksNestYT]

Kaelan The Urban Explorer he was expressing positivity in means he finds to be beneficial. Don’t be an ass.

[@davidhollenshead4892]

​@Kaelan The Urban Explorer WTF is wrong with you ??? People of Faith are not trying to convert you when they say "god bless you," it is a term of endearment...

[@BecauseHeLives39]

Kaelan The Chuck E Cheese Fan your the one using it. The guy was only saying God Bless to express positivity. Goodness

[@ravelyv]

my little brother got diagnosed 3,5years ago and sadly because of where we live spinraza isnt available, which is such a punch in the gut and sad. I cant even imagine having to lose a brother...My condolences to you and your family

[@Vennnzottv]

Im glad you guys made it onto SBSK because i wouldnt have known about you before

[@allcomplations3430]

Me too

[@mtvjackass74]

Same here.

[@auraobscura6808]

Same and I love that other people know about sbsk well of course they do but I didn’t think it was that well known someone would talk about it lol

[@Chief-Solarize]

Be thankful KZbin allows this channel to have comments. KZbin took SBSK comments away

[@Chief-Solarize]

@Make it lucid It's been a few months since I watched it but SBSK made a video about KZbin remiving all of their comment sections. Chris will sometimes refer to the situation in the community tab. Check out the video if you havnt already.

[@janellejarvis1557]

Shane, may you live a long and wonderful life with Hannah. With the evolution of science, medicine, and technology, your future is looking up.

[@1purplerose]

Shane, I'm so glad ur life expectancy has increased and ur able to enjoy a brighter outlook. No longer sitting around waiting to die, essentially.

[@DaliwolfBacon]

I found you two via SBSK, and I LOVE that you share your story with us! I am so glad the synthetic DNA is there for you, and I hope you can continue getting it until they find a cure!

[@Tacomans_56]

Thats so fucking awesome that they found a cure in his life time. Im so happy god blessed us with people to find these cures for awesome people like him

[@skinsey85]

@@Tacomans_56 Well, they still haven't found a cure for SMA so this is a treatment to stop the progression of the disease. The research to find a cure is ongoing. It's still awesome and a major milestone though because it will allow so many to have a better quality of life.

[@Tacomans_56]

@@skinsey85 u really didnt have to let me know u just want to be right about something on the internet

[@FortexVize]

@@Tacomans_56 lol what is your problem?

[@cherishedvalor]

Edward Garcia she was SUPER respectful and kind. You’re being rude.

[@kare6878]

Hannah is such a lucky girl and I mean this wholeheartedly. Actually, you’re BOTH lucky. Shane, your outlook is admirable and your humour is on point. It’s easy to see how Hannah fell in love with you. I wish you guys a long happy life ❤️❤️

[@amber_Forever16]

Lord Jesse she probably just gives him hand jobs, but who knows? Not everyone has to have sex, but they do want children. I don’t like to think about that part but having someone You can get along with and talk to them about ANYTHING is priceless!

[@CassandraFoxDance]

Ohü

[@chevychase805]

@@amber_Forever16 Omg that's an obvious subject that goes through everyone's mind I think. Idk about their sex life nor do I really care lol, but I figure his peinus still works even if she does most of the work, ya know? Idk they seem like a very happy couple so good for them.

[@carolmccanse4468]

Lord Jesse your comment was so unnecessary and disturbing!! I will pray that one day you may learn to live with the Confidence and love this man and his love share together. All i can come up with.. is you must be very young about 13 is my guess.!! 👍🏻

[@bibibabibu1]

@Burger Boss Yeah she'd take him over you. My condolences. May you pop your cherry one day without paying for it.

[@tiffanywalsh9493]

The power of people being authentically themselves is just glorious. Thank you.

[@mistdrae]

These comments always say “Hannah is mean.. why did she say that? “ But they don’t realize that the fact that they can joke around and roast each other shows how real their love is. It shows how Hannah sees shane for him and not SMA.. that she doesn’t have to overly caution herself to not say something “wrong” . She just be herself, and I think that’s amazing.

[@Sara-gl8ue]

Everyone is too sensitive these days. Humor is the best way to deal with life's challenges.

[@richluvsellie1]

Yes...people worry about saying the wrong thing today...I'm old, so I say handicapped...my wife says special needs. As the parents of a handicapped/special needs son, who's right.. Me or her.

[@karentucker2161]

And I don't know why more people don't get that. Me and my family are like that as well. We joke with each other about each other.

[@karentucker2161]

@@Sara-gl8ue that's how I look at it.

[@swissmiss116]

YOU DO NOT KNOW THESE PPL!! quit speaking for them weirdo

[@dramac333]

I had two older sisters with SMA. Sondra was born in 1939 and died in 1964 at the age of 25. Technically, she was never officially diagnosed during her life, but there is no question that she had SMA. Nancy was born in 1950 and died in 1994 at the age of 43. I was only 7 when Sondra died. I loved her dearly, but have few real memories of her. Nancy and I, on the other hand, were extremely close and she, her husband Richard and I spent a lot of time together, meaning that for the first 38 years of my life, I watched Nancy's slow but constant deterioration. She married her husband when she was 18, and they were married for 25 years and 1 week. Two days after her 25th anniversary party, she went into the hospital, went into a coma and never recovered. The doctors believed that either her appendix or her spleen ruptured and that her SMA essentially made surgery pointless. At the time of her death, she weighed roughly 30 pounds. She never weighed more than 45 pounds in her life. Shane, I am so thrilled for you that Spinraza is helping you so much. Yes, part of me wishes that it had been created 25 years earlier, but I have no regrets. Nancy knew her life span was limited, so she truly lived a life designed to squeeze in as much as possible in the time she had. But for you, I hope that Spinraza and whatever additional advances they create give you a long and happy life! Cheers!

[@MrBreadisawesome]

❤️

[@mayasperry]

❤

[@veronica213LA]

God bless u

[@xxsiobhanrxx]

💛

[@reecejohs3334]

♥️

[@jamiebernard3522]

I read everyone's comment saying how you and Hannah are lucky to have found each other... and now I feel like the lucky one to have found y'all.

[@silverwingssilverwings-bv5ry]

Ya you two alright beauty and the beast lol

[@tinablackwood8230]

U are so right i usually dont comment unless it really touched my heart but these two incredible people make me still believe and restored my faith in myself( thank u guys for that !!!) God Bless them !!!

[@sunnydawn7189]

Ditto!!!

[@tamerabarnes5485]

Same

[@christinakleslie2511]

Totally Agree 💯

[@neighborhoodfriendlyquadri343]

I’m so incredibly proud of you man!! You’re a HUGE inspiration! When I got paralyzed 3 years ago, I was 5’ 11” and 160.. pretty muscular and athletic. I got life-flighted to Harbor View Hospital in Seattle. My first two weeks, I had muscle atrophy big time! I lost 37 pounds of upper body muscle just in that short 2-week period! I love you guys!

[@gloriaagatha3237]

Wish u all the strength❤️

[@user-hr6lo8yt6x]

"It's not a bad thing, it's just a big thing" wow that's a really powerful way to describe that feeling. I think a lot of people can relate to that.

[@melissamccabe8542]

I work in a department in a large hospital that offers Spinraza injections to patients with SMA. Watching someone wiggle her finger who otherwise hasn’t been able to do that in years is amazing. I love hearing about the injections from your perspective! And Hannah- feel free to give the staff tips and tricks on transfers! I like to take advice from the patient/family/care givers since they live it everyday! Thanks for sharing!

[@rosieglows]

Does it repair or just prevent progression?

[@JanaINJax2]

I love the dark humor. I’m cracking up. You two make a great pair!

[@Sandra-vk4lf]

You two are a breath of fresh air in this sick world 💕🤗

[@todtucker7096]

Shane! You are owning this disease, and not letting it own you! The Lord is using you to help a lot of people!

[@nicolasmuro2290]

Seriously how tf can 200 people dislike this ? I’m sorry but all this channel, all their relationship is one of the most beautiful things that I’ve ever watched.

[@Ant-fe7ku]

they were smiling so much that he was getting help that they misclicked

[@HalfB]

Nicolas Muro sock puppets and bots

[@chillociraptor5007]

They trynna do a thanos and make it perfectly balanced. As all things should be.

[@stillirise9705]

@wes bd and if you've a. Rain you use your freedom of speech wisely, or it makes you look like an idioy

[@maranathacomelord7115]

Just trolls, Every video on youtube good or bad has thumbs down. on My video they are completely ignored.

[@kaangtv2579]

ladies and gentlemen... this is what true love looks like. Keep that positivity my man and it will take you a very very long way 👊🏼 god bless.

[@gracebalogun430]

Amen !

[@scorpionqueen3550]

Amen yeah as well 👛👜👝🛍🎒

[@davidhollenshead4892]

@@brucethecardcollector You are being very sick...

[@eleatherman1]

vintage90s collector I’d like to answer that, Mr Shallow. Apparently, you don’t feel worthy of love unless your physicality can be on exhibit. Guess what, no woman in her right mind would be attracted to that so what else you got? Did you know you could be stricken with disease or seriously injured at any given moment? In that case, I would pray to God that those who love me would be there for me. Not likely to happen to some ego maniac. Now go somewhere you might think you are wanted and grow up!

[@pinkbunny7254]

vintage90s collector YOU are a disgusting piece of shit. My grandpa was crippled and him and my grandmother loved each other and were intimate, they have 5 fucking kids. You’re a piece of shit, sorry no one wants you.

[@ruthwallace2039]

The way Hannah is protective over you is the sweetest thing, like she doesn’t want anyone else touching you whether they’re experienced or not

[@TheoryAug]

🤮

[@alastairgreen2077]

People who make hateful comments are ignorant, sad people, You are a wonderful couple, and I am glad I discovered your videos.

[@noahpaez4266]

"Atrophied little giraffe boi" 😂😂😂 damn Hannah

[@rana5974]

Noah Paez 🤬

[@chriszanf]

They should definitely get tshirts made!

[@Metalpazallteway]

Sweetly & Savage

[@gabriellegonzalez290]

“an atrophied little giraffe boy??” i was cracking up 😂😂😂😂

[@mandy4401]

Gabrielle Gonzalez i love that they haze each other. you can see how comfortable they are around each other.

[@tpineda7760]

She bogus for that lol

[@bandgeekonflute]

I love how he said "man" before she even said she second word in that sentence!

[@riannabarnes826]

“Eat your feelings!” 😂 You guys are too fricken adorable. What a blessing you guys found each other! Praying for your both always. God bless! ❤️

[@patricialangeveld1227]

I'm so happy for you Shane. I'm glad your life expectancy is going to be longer. You're an awesome guy!!

[@zoeh6547]

Your the most strongest person I know. My sweet Cousin passed away back in 2010 from the same disease. She was only 5 months and I miss her dearly

[@smalls_2667]

Zoe Hartwell I’m so sorry, God bless you and your family ❤️🙏

[@JaimeMesChiens]

Zoe, so sorry. I suspect that your cousin had SMA Type I. Shane is Type II. It’s a cruel disorder. The genetics are, every day, unravelling and revealing more about the disorder and treatments.

[@zoeh6547]

Liberty Hussein ••• She did indeed have type 1, I wish Spinraza was available in our country back then, unfortunately my cousin would’ve been to young to undergo this proceedure...

[@TheAuntieBa]

Ohhh, so sorry! 5 mos is way too young and it must’ve been so hard to lose. her. My heart goes out to you and all her family and loved ones. 💚

[@lindagarcia8826]

Zoe Hartwell I will say a prayer tonight for your family. May God bless your Cousin's loving Mom, Dad and you and along with those that loved her. Much love, Linda

[@christinebartleson3838]

Hannah had me laughing so hard!!! I understand procedures like this all too well. Remember, there’s only 24 hours in a day so it will be over very soon. I love both of you so much. Anyone that sees you two can see how much love you have for each other so I want to say, thank you for sharing your lives with all of us. ❤️❤️❤️❤️❤️

[@sidessherri]

You both inspire me. Hannah I once thought I had a support person like you in my life. Alas they failed and left me alone to deal with my disease. There are wonderful people in my life who help me but like Shane says you hold him at night. What a blessing😇

[@pollacksharman0147]

Hello how are you doing 👋👋👋😀😀

[@roadpizza3470]

These two are just incredible. What a wonderful friendship. That is what we all want. Our best friend and soulmate. Keep on trucking!

[@claudiamiller5895]

“Atrophied little giraffe boy” Hannah’s expression of humor is so dry sometimes and it always cracks me up. I love that she takes walks alone because it gives both of you some time to gather your own thoughts and possibly think of new ways to roast each other when she gets home.

[@emeryr-u9890]

I love that you give us all sides of this life you share together. You're both hilarious, and most of the time, we see you being hilarious, which is great fun. But you're also actual real live people with complex emotions, and I think it's really wonderful and meaningful that you show us that, too. Everything you talk about in here, Shane, is super real and scary and awesome and all of the things, and thank you for trusting us (the Internet) with those feelings and facts.

[@bobbiebuckle1017]

My friend has your condition and was denied for that treatment in Canada because she’s too old. Her parents were told she wouldn’t live past 2 and she’s 35 now

[@livinwithlizzy]

This video got recommended to me and I'm in emotional SHAMBLES. I am so grateful for modern medicine. I am so overjoyed that so many genius minds came together to make it possible. As someone who has had cancer, it's just a huge humbling thing. While I completely understand the big dgfbdhdh thoughts about being dependent on it, I'm just caught up in how fucking cool that is right now.

[@zanelemofikoe2374]

The thing I’ll never understand is those who are faced with so much adversity can be so positive about life!!! It’s truely inspiring!!!

[@michellebaker6302]

You kinda have to be. Otherwise you'd literally not get out of bed in the morning, there would be no point. I speak from experience.

[@tinastalter7073]

Love the way Hannah teases you! It seems like she keeps you on your toes😊 Great to see you getting stronger. I remember a video when even chewing was becoming more work than you thought it should.

[@kimmieuhl3013]

You two are so very strong and down to earth. Raw and real with your story and struggles. I love watching you two interact. The way Hannah looks at you with such love and adoration is just so beautiful. You guys are an inspiration for so many reasons. Wishing the Brightest Blessings to you both 💞

[@leslieannbarker]

'Live as hard as I could and Love as hard as I could'... such inspiring words. Even to those of us who may be able in body... but have/ are experiencing great difficulties in life. Thank you for sharing and being so vulnerable.

[@riverrose6463]

My niece died from SMA at 18 months old a few years ago. To see someone with SMA live such a long life so far, really makes my heart happy. I'm so glad you and Hannah found eachother. I wish you all the best and send all my love to you. You have such a wonderful sense of humour and lively spirit.

[@nova-leetaylorerose8229]

Shane looks on the verge of tears in this and Shane I just wanted to tell you I love you and your videos with Hannah and will keep you in my prayers and also wanted to say thanks for giving us the opportunity to get to know you and Hannah I really appreciate your videos and sure lots of others do to because by the looks of the comment section you seem to be helping a lot of people overcome depression and getting through a hard time so thank you Shane and Hannah ❤️❤️

[@davidfitzgerald3653]

Dont know how i started following this but i did and have fallen in love with this couple. They are incredible people. I pray they find a cure for this guy and his amazing girlfriend. I cant tell you how amazing it is to go on this journey with this man not even being married. Amazing caring woman.

[@stevencrewe3434]

This video really affected me emotionally. When you spoke about the drug and how it changed your life...and how you would have to take it every four months for the rest of your life, I totally know how you feel. I was diagnosed with AIDS twelve years ago. The antiviral drugs I have to take everyday keep me alive...without them I would only live from 6 to 18 more months. These drugs are extending my life indefinitely and I am so grateful for that. But the body can become immune to the effects and the drug no longer works. That has already happened to me once. Fortunately, there are almost 30 HIV drugs now. My doctors were able to find newer and better antiviral drugs that are working for me now. Also, I sometimes worry that i won’t always be able to get the medicines I need to stay alive. That is a very big fear for me. Our situations are very different, but emotionally similar. We both have to accept and live with medical problems that many can never fully understand. Hearing and seeing you lets me know that I am not alone, and it has made me a little bit stronger. Thank you so much for having the courage to share your life with me.

[@Heyitsfab]

you have an incredible amount of strength ❤️

[@mariaamb6687]

💚

[@abilevitt3334]

❤️❤️

[@stevencrewe3434]

@@abilevitt3334 Hang in there. You are thought of often 🙂

[@MologadiMakhafola]

You are doing amazing! You will always have access to the drugs, you will never run short. You got this!

[@denisejustdenise]

"It's not a bad thing, it's a BIG thing." You know, life has a lot of big things for all of us. You're so normal!

[@ElleE953]

I love your love for each other.

[@angthomas71]

I honestly do not remember how or why I came to your account, but I am hooked. The two of you are so positive and candid, and it radiates. I love and appreciate your sharing your love and your struggles. You are teaching so many people, that no matter what there is a positive life full of love. Thank you, I needed this.

[@pollacksharman0147]

Hello how are you doing 👋😀☺️😀😀😀

[@Flutistno3]

She's so protective of him. It's adorable. :) Love you guys!

[@furies]

The strength exhibited by yourself and Hannah is extraordinary. I respect the hell out of both of you. I have 2 nieces by marriage and they both have sma. One is 18 the other 16. Beautifully, they both make the most out of each day and are great human beings.

[@talananiyiyaya8912]

Have you considered a gofundme that you could tuck away as a "in-case I have to buy this medication without funding" emergency fund.

[@dontshootyoureyeoutkid]

Just found you two.... loving this VLOG.... as a nurse Hannah I love that your questioning the nurses capabilities.... its ok and any nurse worth anything will appreciate it too. Love when family and loved ones are involved. And truth is there may be some staff who are not familiar with a patients certain needs if they dont deal with issue regularly. They should be saying “hey, show me what helps your loved one be most comfortable! You know him or her better than me” Look forward to watching more of your videos. ❤️

[@kerrybethbryant1625]

Lori Fiduccia I totally agree! As a medic, I understand that the patient, family, and caregivers know what’s normal for the patient and what works and what doesn’t in their care. I always appreciate their help and guidance, especially if the patient is able to communicate with me. I will still do my job to the best of my ability, but medicine is an art based on science. It isn’t cookie-cutter across the board. Thank you, Hannah and Shane, for sharing your story and including us in your lives. ♥️

[@peaceonearth351]

There are good and bad nurses. It really sucks when I get a bad one. Makes the whole stay at the hospital horrible. For example, one time I was under anesthesia and the nurse slapped me to wake me up. I woke up alright, ready to punch. I asked another nurse and asked her if that was the procedure to slap someone to wake them up. She vehemently said no.

[@HollySue_TheBarber]

Now THIS Neds to be a shirt-. Life is weird and cruel and full of excitement!!! I rewound that so many times. Nice to meet y’all. Holly here for Okc, it’s snowing today & im stuck inside. Glad I came across, lovely people💕❤️

[@Bboykidcombo]

on this ride called "life"🤗. we have to take the good with the bad, smile when your sad, love what you've got, and remember what you had. Always forgive, but never forget. Learn from mistakes, but never regret. Sometimes things go wrong and people change. Just remember the ride of life will always ride on.🙏.

[@jaffamix9111]

Always forgive?

[@libbypeach1790]

He’s worth $1,000,000 I doubt that’s needed

[@saramarie7984]

Spinraza is phenomenal! I have a friend with SMA type 1 who is responding incredibly well to it. Best wishes to you!

[@zosoart]

"an atrophied little giraffe boy" I nearly spat out my coffee 🤭

[@AudreyLuerding]

You can defy the odds and live a long healthy life! The power of positivity is real!!! Dont listen to what they tell you your “expected life span is” you got this!!!!!!

[@karleelave7284]

I love how Hannah sounds jealous of the nurses lol Shane talking about how life is unpredictable is what I needed thanks guys I’ve fallen in love with ur love ❤️💜

[@emilyjoy7379]

You guys are so hilarious and a perfect match! It is so hard to have a relationship with chronic illness, but it’s so lovely to see❤️

[@simonpearson7044]

Just discovered you both online and think you are both fantastic. I'm disabled myself and applaud you both for the stance you are taking. I whish you both many years of happiness together

[@mattsnyderARTIST]

Shane I am floored that you are still around. My wife and I did a Laughing at my nightmare 5k a few years back in Bethlehem a 5k that I managed to come in dead last for. Both you and your now wife are an inspiration to keep pushing for a healthier life (obese with Anxiety & Depression) married to a woman (With Bipolar Disorder)

[@388sbc5]

Seeing that you and Hannah are together makes me almost jealous man, I love that. You guys are amazing together and I hope that one day I can find someone who loves me as much as she loves you man! God bless! Keep your head up

[@katierae557]

Shane, I have followed you on tumblr for multiple years now, and I am loving these videos. Your positive attitude is infectious. I wish you and Hannah all the best. ❤️

[@bocatatun]

whats the tumblr? wanna follow too

[@katierae557]

Fernando Crego laughingatmynightmare

[@veelighted7]

Shane. You’re amazing and I believe you’ll live for a very long time and now you’re so young. My cousin Was told in 1982 that her brain tumor would take her life within 2 years. She. Yes has some symptoms but she also is now 60 and happy. Sending love and blessings. Remember to speak life over yourself, Hannah and your future children. 🤲🏼🕊🙏🏻 🌱 🦼 🤲🏻💙☀️

[@pollacksharman0147]

Hello how are you doing 👋😀👋👋👋😀

[@elizabethbrown8833]

Shane, Hannah, this soul inspiring informative video about this treatment will help millions of similarly affected souls.. Such a Blessing. Love to you both from Scotland.🙏🏻🏴󠁧󠁢󠁳󠁣󠁴󠁿💜🥀

[@BABYLOKAX4]

I LOVE that Hannah sounded almost jealous (even if she wasn't n she was jus concerned).. but it was like, nurses are guna move my man around, bitchez don't even know what they're doing 🙄😭 .. LOVE them! 💓💋💕

[@bookapillar]

Yeah it sounded that way to me too ..so precious 💕

[@christinabradley4590]

Yes definitely a jealous streak...🤣😂 they are great!!!

[@neotasci8860]

LiNa M.F. Lmaoo

[@mammakitteh]

I’m sure she as NOTHING to worry about

[@carollevant7541]

Understandable though. That’s her man. It’s normal to feel some jealousy when other woman are close to him even though Shane is clearly as devoted to her as she is to him❤️

[@BryansGMa]

I’m praying every day that you keep on making progress and have a long and happy life with Hannah.

[@DESPISEDIC0N]

Just found this channel, you’re a true bad ass my friend. You are an inspiration. You two are lucky to have each other!!

[@liquidSpin]

I get it and understand what he's going through when he gets the injection. I've had 3 epidural injections to my lower back (long ass needle while I'm fully awake) and I've also had a tube inserted into one of my veins all the way to where my heart is. (PICC line) this procedure was also done while I was awake. So yeah it's nerve racking to go through so I understand what he is going through. I hope they can take this treatment and figure out new and safer ways to administer. Dealing with the spinal cord is no joke. Cheers Shane you may have this disability but you are loved for by your girlfriend, friends and family so believe it or not you're very blessed.

[@malloryo.1082]

I am so absolutely grateful that I found this channel and can not wait to see what the future holds for you two!

[@oliviabasham]

"Big things tend to take up a lot of brain space with their... biggness." I cried. Thank you for helping me.

[@bjspranger]

May the Lord God help you through this and through your journey. I think you are so blessed by having Hannah by your side! Shane, medical science will find an easier way for you to get thus life saving medicine. Hang in there and know that you have a LOT of us rooting and praying for you. Keep us updated and keep smiling your beautiful smile!🥰😇❤

[@chadsullivan8013]

Beautiful to feel how protective she is of him... what an amazing love they have....

[@daniellehawbyy8966]

You are so inspiring to me and to a lot of people. Not because of your disability but because of your positivity. I feel like I know you and anyone would be lucky to do so

[@dawnbyrnes960]

Perfectly said. I so agree with you!

[@bellew24]

I thoroughly enjoy watching you two! It has really opened my eyes to things I would have never thought of otherwise. Your relationship is so sweet and playful. What a blessing you two are to each other and all of us viewers.

[@moonlightshawdow]

Absolutely love the relationship you and Hannah have. It’s cute, goofy adorable and a little bit dark but hey when one of you is disabled there’s going to be dark jokes that both of you make. I am also disabled and my boyfriend is not and he makes jokes all the time and we just laugh about it xo

[@sheilagravely5621]

Omg. I'm crying like a baby. You stay strong and live and love as long and hard as you can honey. Many prayers for both of you. God bless.🙏🙏🙏🙏🙏😘😘

[@ed8494]

"big things tend to take up a lot of brain space with their bigness" That means so much in terms of helping me to let myself have the space and energy to process hard things.

[@garrettnethingvlogs963]

I don’t think he deserves this he is so sweet and adores life, he is so special. ❤️❤️❤️❤️

[@hopemags9642]

Hannah that was the sweetest thing to say about you not knowing the nurses and you hate injection day but you keep going back. Honestly the comments scream true love 💕

[@MsTwstd1]

I have a young cousin who has that, it's so sad, but she is an incredible little girl, she is not letting it stop her from being happy everyday and from fighting

[@pollacksharman0147]

Hello how are you doing 👋👋😀😀👋

[@monkeybearmax]

I’m so happy to hear of this amazing news. But boy I’d be scared too you are very brave! Look forward to seeing you feel stronger.

[@carolcole570]

It is refreshing to hear you speaking so seriously, instead of the usual bantering. Let’s us experience the REAL you !

[@carolcole570]

@@davidospina5216 I died.

[@carolcole570]

@@davidospina5216 Where I am NOW is on high, with Jesus Christ, my God and Savior. Get lost, troll.

[@lindabeasleybrewer1777]

Prayers are coming your way.

[@mynailsalon4118]

When he said I have some bad news, my heart dropped. Please don't do that again😂😂

[@tamster6594]

Sincerely & deeply happy you found each other! & that I found You (both). I've come to think of your channel as my favorite "Romantic Comedy". Thank You for sharing. Never change. Huge hugs.

[@williamdressel5950]

Your a lucky Man Shane . I am 67 and never in my life did I find the love that you and Hanna share .

[@suziesusan9960]

Please I'm here for you

[@smellyolegoat150]

I just love you guys. I know that you already know this Shane, but you are surrounded by the most incredible people. Even if I hadn't seen a few of your vlogs now and already become aware of how amazing you are. I would know it by the people around you. You have brought light to their lives and they to yours. I'm very sorry you have had this challenge to deal with all of your life, but it has made you so strong and so admirable, a true inspiration. Thank you!

[@youserguide]

Your new drug has so many parallels to MY new drug, Ocrevus! I have MS and it has entered the progressive phase. I’ve lost so many abilities due to MS, though my “aliveness” isn’t dependent on it- my quality of aliveness IS. I get mine by IV every 6 months, and it slows down progression; it has even reversed some disability! I feel your pain to a degree. Thank God for this drug and for researchers who discovered it! God Bless you both. Keep these videos coming! 👏❤️🎗🎗

[@courtneytnt]

I hope you continue to feel better

[@mariebrett2179]

Beowulf have you encountered Pam Bartha on facebook..etc. She has MS and has been symptom free for about 27 years. She has free videos about what to do if you have it but she also can be hired as a personal coach. God bless you , i hope things continue to improve for you.

[@youserguide]

Marie Brett Thank you 😊 No, I haven’t heard of her, but I will check her out.

[@sophietopham8822]

There is also a YT video called minding my mitchochondria that may be of interest too