What is Shane's life expectancy? [CC] / Squirmy and Grubs
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- čas přidán 19. 01. 2019
- Shane was born with Spinal Muscular Atrophy Type 2, a progressive disease that causes muscle deterioration and weakness. Today, we discuss his life expectancy and how a breakthrough treatment, Spinraza, has greatly changed his future.
Hannah and I absolutely love making videos for you. If you would like to support our work so that we can continue sharing our life and relationship with you for years to come, you can do so on our Patreon: / squirmyandgrubs
Thank you SO much!
MORE INFO ABOUT US AND OUR CHANNEL:
You can follow us on Instagram at:
Shane: / shaneburcaw
Hannah: / hannahayl
Our address:
Squirmy and Grubs
PO Box 16411
Minneapolis, MN 55416
You can PREORDER Shane’s upcoming memoir, STRANGERS ASSUME MY GIRLFRIEND IS MY NURSE, featuring many never-before-told stories about Shane and Hannah’s relationship, right here: www.amazon.com/Strangers-Assu...
SUBSCRIBE for more! 👉 / squirmyandgrubs
Intro animation made by Pinkietoons! Check out her Instagram page to see more of her awesome work: / pinkietoons
Shane was born with a neuromuscular disease called Spinal Muscular Atrophy that requires him to use an electric wheelchair. He is the author of several award-winning books, the President of a nonprofit organization called Laughing At My Nightmare, and a renowned public speaker who has performed across the country at places such as Harvard University, The University of Florida, The University of Connecticut, Princeton University, and many more.
Hannah is a senior at Carleton College, studying sociology and anthropology. She works as a researcher for an educational consulting firm. Her future aspirations include attending law school and owning a goat sanctuary. She films and edits the “Squirmy and Grubs” vlog.
Shane and Hannah have been dating for over 2.5 years and living together in Minneapolis in recent months. Their interabled relationship often confuses people, because much of society still cannot fathom people with disabilities being involved in loving, intimate relationships. Anyone who watches these episodes will quickly see their relationship is just as “normal” as any other. Sure, Hannah helps Shane use the bathroom and brush his teeth, but those activities do not detract from the emotional, intellectual, and physical connection they experience together. - Krátké a kreslené filmy
![Accessibility in Paris (and Hannah Has a Meltdown) [CC] / Squirmy and Grubs](/img/n.gif)
The sense of humour is everything on this channel lol
Neo KirchBaby right? I actually laugh out loud and sometimes I watch videos over again just to feel good
The money scene was scary, almost imploded here, but then suddenly it was a joke and not you're a millionaire. 🤣
Couldn't agree more. They should be professional sit-down comedians.
@@PinkFrecklWavezSIT-DOWN comedians!! LOL
I agree love them both they complement each other so well funniest couple ever
“My life expectancy is directly related to the steepness of the ramp outside” 😂
I laughed so hard when he said that.
😂😂😂😂
😂
I laughed so loud at that
I sat here laughing and picturing the graph that would go along with that statement and then was like "huh. That's probably what the ramp looks like!" 😛
My friend married someone she expected was going to die within a year. I think It's been over 23 years now...
Shane looks healthier the longer you guys are together!
Holy crap! Plan ruined! Just kidding of course for those who actually say that... They are an amazing couple I support them and their love with all my heart❤️
@@zzzbeewof2447 Actually, that was an insightful response, and your heart is true. My friend had a journey she hadn't expected, that invited her to choose to love more deeply, more authentically, and more selflessly. The same was true for her health-challenged husband. He passed away a couple months ago. Life is real.
🌹🕊
@@rosered9029 When I hear things like this I feel that we still have hope as human beings❤️ True love is what distinguish us from animal. We can choose love instead of everything else... Peace☮️
@@zzzbeewof2447 That's a lie used by humans to help us believe we're better than animals. We're not.
@@zzzbeewof2447 their relationship is fake
I know this video is old, but I want to point out that Hannah's excellent and dedicated caregiving will also be a huge factor for Shane's life expectancy. As a hospice clinician, I see the affect good care and quality of life have on lifespan, and it shouldn't be underestimated!
My friends dad with SMA is over 70. He is awesome, and an inventor, business owner, and a great guy!
jayathome are all people with SMA affected the same? Or does it affect some people more than others
As far as I understand there are various types, different ages of onset, and different degrees of severity.
@@jayathome2898 Yes, and in addition some of the reduced life expectancy is due to things like lung infections since if someone's chest muscles get weak and they can't cough properly, they can get way more sick than most people would from the same infection, and can easily die. So there's a bit of luck too with whether they get sick with something that kills them.
@@wq198mnr There are a couple different types with different severity. Some are milder and slower progressing than Shane has but others are more serious. There is one kind where babies get it and get weak so fast they usually die as babies because they get too weak to breathe. In the past few years some treatments have been discovered though.
If u have type 3 or 4 SMA u can live a normal life. If u got this disease from childhood it will be type 0, 1 or2 and it will reduce your lifetime.
I've learned that if you can't laugh at shit in life, you're going to have a bad time. Humor is everything. I really enjoy both of y'alls sense of humor.
As this other youtuber I watch, rule one for life: learn to love yourself. rule two: if you can't learn to love yourself, learn to love hating yourself.
SO TRUE
Like the South Park episode “you’re gonna have a bad time!” 😆😆😆
People who laugh often live longer
Lmao all I could think about was South Park
She’s a nice girl who actually loves another human unconditionally. Very possible. And god bless.
Same goes for him
Right he’s hilarious a lot of women look for a kind and funny light hearted guy like this
Nope she abuses him he wont last long at all
@@nickaus2778 🤦🏻♂️
Imagine being stupid and gullible enough to actually think this is real... Talk about next level dumb.
I’m glad that your life expectancy is now beyond 30. My Mom was told after my birth that I wouldn’t live to see 30; nor would I walk, talk, or feed myself. I absolutely love you guys. I think your sense of humor is awesome. 💞
Sending love, hugs, and prayers to you, from Atlanta ❤️🙏
Well.. Stephen Hawking’s life expectancy was 2 years after his was diagnosed... he lived to be 76, 55 years after being diagnosed... anything is possible with hope!
God is hope. With God all things are possible.. :)
Natural Beauty God(s)*
@Faith Love Allah is the same God as the Christian God. So is Yaweh. Diff culture, religions, same deity. Still, you are ALL way off. True enlightenment will come when you blindly follow a non-theistic religion called Jediism. You must follow the 16 teachings of the Jedi, and the Jedi code...and BAM you're a Jedi..
but learn you must!
Faith Love wrong
@ Faith Love ... AMEN!!
I loved the “polite shade” to all those negative commenters that speak so harshly about why Hannah is with Shane. Great job to the both of you. 💚🌺💚
Yep
The fact that the same people spend all that time going from video to video to say the same stupid garbage just makes it embarrassingly obvious that they're insanely jealous of their relationship. I am definitely not usually a person to throw down the jealousy card, because I don't generally believe it's true, we just tell people that to make them feel better... but in this case, it's definitely true. 😂 you know these people are extremely alone and furious because they know it's because they're not worthy of a person's affection like Shane is. 😛 I'm alone too, but you don't see me attacking such sweet people! Sheesh! There's just no way to fake what we see in both of them. The way she naturally leans into him when she's laughing. You don't think to do little things like that if you're exhausted of pretending to love someone day in and day out, especially someone you also have to work hard to care for. 🤷♀️ just... duh, right? 😂
You guys are changing the world with these posts. People are looking at folks with disabilities in a different light. Thank you.
I just love watching you guys. My nephew, Kaden, is 9..he has Congenital Muscular Dystrophy and I love him the same as I love my girls. I watch him struggle and this week was his hardest. I’m crying just typing this. Shane, seeing you with your positive and uplifting mindset just inspires me. I hope and pray that Kaden will be as strong and inspirational as you are. Hannah, you are an angel.
“My favorite attribute is her toes”
A man of culture I see
I went to like this comment then realied it was on 69 likes... I mean, I like the comment, but I'm no monster.
Missterious Misstress it's safe to like now. Nearly at 100.
Mmmmmmn toes 😝
Ayee feet is where it's at. Every girl I've been with who thought it was odd or weird, now has a new found appreciation. Free massages on demand.
SKDK i mean I was just joking but alright
Yo I take care of a person with SMA!!!! And they are 82!!!!!! So keep rocking!!!! Your gonna be around for a long while!!!!
Irene Blaney I do too he's 18...he reminds me of Shane...really quick with his mind and a good sense of humor
Thank you for sharing this 💕
Looks like she’s gonna have to wait awhile for that money
Bless your heart
@@hipolitatorres1007 wtf is wrong with you
I think his lifespan is much longer then most with this condition BECAUSE of the love they are sharing as it brings such joy to you heart and soul. Peace guys.
Your relationship is so beautiful and touches me deeply. My sweet baby Connor was typed between one and two when he was diagnosed with SMA. He passed away when he was 4 yrs 7 mnts old. His life expectancy was 2 yrs old. I see him when I look at you Shane, and it fills my heart with love. I am so grateful to watch you live a life filled with love, joy, and peace. It warms my heart knowing you ate do very loved by Hannah. You both...well, my heart is full. I wish I could find the words to express what I am feeling, but they're in the form of tears rolling down my cheeks just now. Your life is beautiful, Shane. You are so beautiful to this mama, who is missing her Connor
❤
Hugs and love 💕
I never click faster on CZcams notifs except for when Shane and Hannah uploads something new
Edit- oh damn 360 people liked this?
pim svensson I know exactly what you mean. Luckily I was on CZcams when bell 🛎 rang! They are best part of my day.
Same! They’re so funny!
You need to get a life.
@@Tryphtastic i love them!
@@robh1701 Yeah i do
“Now I have to wait longer for the money” 😂😂😂 y’all are too much
LOL
HAHAHAHAHA
That's exactly what's up
Michele Marie cuz there is so much money with the cost of his medical care. As someone with a chronic terminal illness that is nowhere near as complex as Shane’s, medical care is through the roof. I have Medicare, a Medicare supplement, AND private insurance through my partner, and I still pay thousands a month on bills, medications, otc stuff, and general crap to keep me from being totally miserable and in constant pain.
I had ONE procedure that cost $100,000 last year- it was 60 minutes in a surgical center (NOT a hospital), and that $100,000 only covered the center and the nurses there. The doctor and anesthesiologist charged me another $25,000 EACH.
Keep thinking he is going to be leaving her millions lol....
@@Boredchinchilla well, he seems to have all équipement, transportation etc... plus still able to pay this big house with a big pool n all, i think hes got lots of it $$, would be nice to be wrong, but im not!
“I thought it was 30?”
This made me shoot the water I was drinking out of my nose.
Jake Whitehurst you were drinking water out of your nose?
YourOnlineMentor wait, what have you been drinking water out of??
I personally drink my water through my anus, but you do you.
I discovered your story by mere chance some 30 minutes ago by accidentally misclicking while randomly surfing on Instagram. You guys are just on another level, to me it feels almost foolish: you could have lived your lives on your own, and that alone would not have been easy (I suppose), yet you decided to tell what you are going through, despite the possible hate, scepticism and hate you are receiving, with the aim of helping others and giving role models (at least I guess). AMAZING, YOU LEGENDS!
FWIW My wife who has a similar condition to shane and she burps a lot as well. She also says it has something to do with her diaphragm.
Shane if you don’t live too 100 I am calling the cops
Andrew Weizer lol
Sounds like a joke with a really good underlying meaning.
Lololol
lol
Shane’s sense of humour must make your lives so much happier every day..God bless you both xx
Your ability to be vulnerable and share your life is truly inspirational.
"Okay, well now I just have to wait a lot longer for the money" hahaha
I laughed so loud, my bf was like are you ok?? 😂😂
Sarah Hello Beautiful do you mind subscribing to my channel & I ALWAYS SUB BACK RIGHT AWAY !!💜💜✨ czcams.com/users/showstopazli11
Shattering them toxic stereotypes with humor and love! I dig it :)
I love how you educate everyone on your health concerns. Just found your channel and you two have been so refreshing and a hoot to watch ☺️
Discovering this channel and seeing you two really made my day! So very happy for you guys! You two were meant to be :) This world could really learn a lot from the compassion, and love you have for eachother. Thank you so much for sharing everything !
56 y/o with SMA II married to my darling husband, my college sweetheart . Happy and well! Glad y'all are too! 💕
You are unbelievable Shane. Your wit, charm and glowing personality is infectious. You and Hannah together is an unbreakable combination. Please come to England again cos I’d love to meet you both.x
💗
Beautiful comment.
JANET ADAMS☆☆☆☆☆YOU COULDN'T HAVE SAID THAT ANY BETTER. THEY'RE AN AMAZING EXAMPLE OF A HEALTHY RELATIONSHIP FOR YOUNG COUPLES THEIR AGE.♡♡♡♡♡
right!?! I was so sad when I learned half a year later that they were in London & I was right there too!
@@jenniferhoaglin566 no one could have stated that better!
My favorite thing is seeing you guys joke and laugh with each other. I didn’t witness healthy or happy relationships in my family when I was growing up. It’s healing to watch you guys. You’re both so kind to each other and clearly have the same type of humor.
I just received news of my best friend's 16 year old son passing. He had SMA. I looked up SMA, and was lead to watch your video. YOU GUYS ARE AWESOME!! Great information and beautiful sense of humor. You are definitely helping others. Thank you and God bless. ❤🙏🙌🤗
I love the way Hannah looks at you when you speak, Shane. She is soooo in love with you. I also love the respect the two of you have for each other- you never talk over each other, you never interrupt one another- honestly, you are kinder and so polite with each other. It's truly a rarity when you see couples talk on camera- to not have them interrupting one another. I forsee your relationship "life expectancy" to last as long as your lives- which is forever! Sending you both much love and light! xoxo Jen
@@danroach8801 shut up
@@danroach8801 you are a typing peanut
Koisneurotypical i do too!
You are really naive.... the first purpose of this vlog is making money... you don’t have to expose your life and misery to the world in detail, especially when it is to collect money.
Absolutely agree :)
My wife was born with severe scoliosis [I didnt know that could be a life threatening condition until I met her] She was told her entire life she wouldn't survive beyond "3, 9, 16, 20.." To this day she has a rod from her neck to butt, and is twisted severely. She has had ribs removed because they pinched her lungs too much. I met her at 39, she said she would be dead by 45. She will be 47 in March! Take that, doubting Drs! Lol. Oh, and taking care of my wife does not impact the love and intimacy we have ALWAYS had for each other... it's sad to both of us that we are looked at as weird most of the time.. I never understood what the taboo issue is with interabled relationships. It sucks :/
You guys, Hannah and Shane, are awesome.
This is an amazing comment
@@vitaliykoponen7558 :)
Incredible ! You two are very strong ! I wanted to ask... If that's okay of course... What is your wife's scoliosis degree (and i mean angle by that ) ?
God Bless your and your wife . I agree that it's a shame that people judge what they don't understand . It's like if your not normal looking or able to do the things they class as normal then your a freak . I don't agree, and we should be thankful and bless those that weren't so lucky, and love them for their strength to carry on as their the true hero's . I love that you you shared your story and that there are people out there like you and Hannah . All My Love to you and your wife . I pray that hopefully shows like Hanna and Shane's will wake people up , and help them to understand that where all human regardless how we look . :):):)
@@eusanagalilee360 I was just talking with my wife. She believes she was born with (+/-) 60° or so she remembers.. she had her first surgery at 4 where they fused most of her vertebrae.. then at growth spirt age, another surgery (ribs I think), then had her Harrington Rod put in when she was 19 in 1991. The last time she went to her surgeon in 2012ish, she was at ~52° which is worse than it was 10 years prior. There's nothing they can do at this point, she is looking for any kind of alternative therapy.. but no luck so far.
He has the best personality. He should be a comedian, I’d pay to see that.
No it's not. It's just self irony and sarcasm, on some basic level. Stop sucking up just cuz you feel sorry for him, and be honest about it.
Woah.. 😂 caaaaalm down dude. Just because you feel that way doesn’t mean I do too. I genuinely think he is funny (and they are cute) why the fuck else would I watch their videos?
Clearly you’re bothered and should get off CZcams sir.
@@rosiederuntz3745 It's not about if they're funny or not.
And yeah, I'm sure you'd be very happy with someone like this, and not being able to ever have sex or get touched properly.
People look for lots of different things in relationships dude. It’s not always about sex, yes that is important (to me) but it is NOT a deal breaker. I love my husband for who he is and who we are together and we are a team. Sex is the bonus. You clearly have not been in love and felt that same love back.
AND I’m sure there are plenty of other ways they make THEIR sex life fun. Not my problem tho, and not yours either.
@@SimbaBrank23 typical sad, vain and shallow individual.
Just because you're miserable with your life don't project onto other's.
Love how you guys take the micky out of those that don’t understand your relationship.
Some people are so stunted in their understanding and you guys have so much more awareness of the joy that we get from loving another human that I’m in awe of you both!
Hannah committed so hard to that joke 😂😂 I was like oh that's funny and then she was like are you serious and I was like oh did she not know, she must be so happy now then? and then she explicitly said the money part 😂
She should act!
I actually thought she didn't know his life expectancy either. She really seemed shocked. lol Love these two
Cutest couple ever , she’s gorgeous and he’s hilarious and handsome ! I love you guys with all my heart ❤️❤️
That joke she made was legit the first thing that made me loudly and genuinely laugh on the internet in a loooong time!
Waa
I'm in my seventies and appreciate both of you so much. Again this is unconditional love. Bless you both
You can definitely see why Hannah fell in love with Shane. His sense of humor is amazing! Love your videos! You guys are ADORABLE!
I just discovered you beautiful Angels today and will never complain about my circumstances again.
Your love for each other is one most of us do not even imagine. It's pure, unconditional, and selfless. Bless you Shane and Hannah. Thankyou for showing us what true love is about.
Look forward to following you story daily and sharing with others. Love you guys 🤗🤗
I think i am falling in love with them
Snipe Your ass do you apply the same logic in your life? Are you looking for a female you find really ugly because that proves that you have a good heart? Or are you just going to be a normal human and get with whoever attracts you in whichever way ? I bet this comment will be too hard for you to grasp.
Sure I'm sure you would be happy to take her place 😁
Its bullshit
“Unless I take a divebomb off the porch over there” I died when he said that 🤣🤣🤣 you guys really are the greatest couple.
That is such great news, live large my friend.
I don't remember how I discovered you all on insta, but I have followed you for a while now over there. Tonight I had some unexpected alone time and decided to follow you over here and take a deeper dive into your Incredible Lives. I could write a novel on how wonderful it is to watch your videos, literally laugh out loud and just spend time with you both. But since Hannah's life expectancy is apparently being cut short, I will keep it brief. I believe we are all here for a reason. I believe that the two of you, and what you bring into this World, are carrying extra weight, and all I can say is thank you for that. So very much Love and Light to you both, David.
Well found my band name.”NOW ON STAGE LETS WELCOME SHANES GAPING DIAPHRAM”
Hahaha
Joshua Price - 👌🏼😂😂😂😂
Hahaha!😂
Brilliant!!
Joshua Price Y’all are killing me with these “band names”.😂
Hannah should be an actress you pulled off your joke splendidly.
I agree she did.
I had two childhood friends with SMA, one of them recently passed away after battling with pneumonia for 2 weeks. I don't think he was on Spinraza though. I'm so happy for you Shane, and Hannah, you both are an inspiration, to me personally as someone in a wheelchair who struggles with relationships with able bodied people. Thank you for giving people like me hope. Wishing you both so much happiness! 💗
I was lucky enough to see one of your videos 3 days ago and I haven't been able to stop thinking about you both since. Thank you for putting yourselves out there in such an honest and organic way. As an outsider looking in, the energy between you is incredible and beautiful. I have a 17 yr. son that is living with a severe neurological disorder that was diagnosed when he was 4. This affects all of his motor & vocal functions, as well as all his large & small muscles. The emotional, mental and physical pain that he's endured, especially out in public, has been beyond words. However, about a year ago he set out on a path of making changes regarding all the things that he could control (his thoughts, feelings, behaviours, attitudes, beliefs, etc) and stopped focusing his energy on the things he had no control over (other people's behaviours, beliefs, etc). This emotional transformation has been an ongoing process that has greatly improved the quality of my son's life in so many ways. I am filled with gratitude for the bravery and honesty it takes to upload such intimate aspects of your lives to CZcams. I believe that videos such as yours were the motivating factor that started my son on his life-changing, personal journey. Thank you for what you do.
y’alls humour makes the relationship pure x100 😭
Two angels in people’s bodies . Absolute love and kindness radiating from both of you . Awesome!!
I wish there was more people like Shane & Hannah. It is the reason why I have subscribed to your channel. So much respect for each other. Love you both.
I love how incredibly upbeat, positive and uplifting you are. You’ll probably outlive us all just because of your positive attitude 😃🤜🏼🤛🏼
shane needs to do stand up or some kind of comedy show, he'd kill it!
you two have the exact same sense of humour and its so fucking good i love it
You guys are so fun! I love your open and honest relationship. I love that you can joke around and don’t have to tiptoe around Shane’s disease.
He didn't do it too much in this video but I die whenever Shane makes his eyes open real wide like if he's viewing a monster or something. You both have such a great sense of humor!
This whole thing here just explodes all of my preconceptions about everything. Congratulations.
Hannah, you are hysterical! You had me going there for a minute...you looked so DISAPPOINTED that Shane might possibly live past 30! 🤣😂😅😄😉❤❤❤ omg..you two! May you enjoy a long, happy life together!
The banter between you is seemless & u truly GET each other! Wonderful, so hopeful, this next generation has some heroes in the two of you!
this could be the best 7 minutes I have ever spent on youtube. I cannot believe how beautiful and natural you guys are! It looks such a healthy and an open relationship while we are mostly trying cover up the fact that we are burping and farting like we are robots. It must be nice to be in a relationship where you can talk about everything
My brother had Muscular Dystrophy and sadly passed away at the age of 15 I’m so happy to see you thrive and live your life to the fullest , wish you two the best of luck on your journey ♥️♥️
Always a rough topic ... I know it has been for us ... but day by day is worth a million.... !!! Please start using you bipap at night and allow your lungs to rest!!!!!
My hubby has MD as well just a different form. I have been sicker and more surgeries and such than my husband !! I think everyone is seriously on the same path. Life expectancy isn't really anything any of us can predict.
Yes please do all the things Hannah says you could be doing to improve you health! xxx
@mommymode1985 I have DMD and use one. It's a Non-invasive ventilation and helps get rid of CO2 at night because of weak muscle. They are also a god send if you have cold or flu because you can cough mucus up easier.
mommymode1985 ~ A bipap and cpap also help the organs receive the proper amount of oxygen. Such as the heart, liver and kidneys.
Awesome thanks guys for explaining it ...
@mommymode1985No. Your lungs "don't build strength." They're not a muscle. SMA in a simpler term, halts the growth of organs and muscles and not only do your lungs need to be at full adult capacity to be considered healthy, they need to be supported by the muscles surrounding them.
SMA deteriorates the body. Without a Bi-Pap (which isn't the same as a C-Pap), the lungs simply don't get enough oxygen and they never will.
I was so thankful to hear that you're going to have a normal life expectancy. You guys are absolutely amazing and you guys never fail to have me chuckling and smiling. Thank you :)
"Strongboy!" So happy and thankful for Spinraza and all the research for these terrible diseases. You make it easy to understand it all! Thanks, hope you are having a wonderful day!
Yup, lol, that reference killed me.
Love you guys. I am disabled to. I was born with "osteogenesis imperfecta type 3". I am 31 yrs old and I am wheelchair bound. You 2 relationship reminds me of my sister and I relationship/friendship. We also have a dark sense of humor. You guys keep me 😂😂😍😍 Be safe, stay warm and positive. Continue to be yourselves! Your new wheelie friend Ty 😍👋🏾
Love lengthens life. If it seems others are unable to love you, love yourself consistently.... that is the key to lighting up your life so other loving people can find their way to you.
Great news! I'm so glad to hear you two can grow old together. You're are really an adorable couple
Shane’s sense of humor is literally everything!!!! You two are so cute and total couple goals! Hannah you are the cutest! I don’t think there is anything weird about you two and your relationship! The love you have for each other is undeniable! It shines through both of you! Glad I found you two! You totally crack me and make me smile! Xoxoxo 😍♥️🤗💋
I know I ask this in most of the videos but pleaseeee can we see a video of how independent Shane is when Hannah isn't in the house! How he prepares his snacks, uses his computer and phone....along with anything else thing else he can do by himself ? What's his range of motion ?
Jennifer Williams well that's my question. How are they done. Because in a video, Hannah mentioned that she's not always around and that he prepares snacks for himself. How?!
robyn smith He talks about these things online on his Tumblr.
Irie Marie thank you. I just sat here and read every post 10months back and found part of what I was looking for in post 16 or "day 16". I would love an updated version of this to see how, if at all, spinraza has changed his ability to feed himself.
I had an uncle who lived with SMA. He was wheelchair bound from his early 20's, and ended up living to be 58, and it was indeed pneumonia that claimed him in the end.
You two are the most sweetest and funniest couple’s I’ve ever seen on the internet! Actually, I don’t even know any other amazing couples like you guys; so, you two are the most sweetest and funniest couple I’ve ever seen! 🥰❤️
I’m going to buy your books Shane. I will start off with your book that is linked in the description here. You’re so amazing. You BOTH are! Much Love and Infinite Blessings to you both. ❤️✨🥰
Lmao this channel is actually so amazing. They put similes on other peoples faces so easily and I love how non-PC they are omg. Especially with how strong their relationship is, they're literally one of my favourite CZcamsrs out there.
I hate hearing life expectancy! My sister has had it over her head literally since the day she was born. She is now 38 and still rolling! We don't say that around our family...instead we find humor and just live day to day. I mean aren't we all facing death at some point!?! I love your channel and love your humor! Keep rolling!!!
Me too. I wasn't expected to lsst 24 hours when I popped out. 50 years later, I think they miscalculated.
@@ChrisPage68 yes! They've missed calculated on my sister too! This last check up they tried saying she was "on the downhill" And I immediately stopped them. Who are they to say how long my sister has left to live. She wasn't supposed to see age one and here she is 38 years later. While her health isn't the best we don't dewell on it. If we had can you imagine the kind of life that would have been. I'm 5 years younger then she...and out of everyone she is the one that has taught me to live the most! Now SHE is helping me teach my own children how to live each day to the fullest. The way we look at is...were all in borrowed time amyway. So glad they miscalculated you too! Here is to another 50!
@Gloria Vargo thank you so much ❤
Yep!! Last time I looked, my Birth Certificate didn't have an expiry date....so it could come at any time. Make the most of every day!!!
@@ChrisPage68 Ha! Yeah, they did. Good for you.
Guys alive and has a hot girl with him, things are going much worse for a lot of other people. I'm genuinely happy for him.
I love Hannah’s humor so much and both of them have a great sense of humor they’re so perfect for each other I live them
he predicted him falling down the ramp.
shane equals psychic
She wants him to die clearly
I know ironic, and they were talking about how slippery it is in Winter. Hope they have got it replaced by now, because the next time he might not be so lucky.
The humor and sarcasm is the best here. I love the intimacy question about Shane rubbing his nose all over Hannah. I still laugh at that to this day.
God, I love you both very much. You two are most definitely one of my favorite couples of all time.
" Well now I have to wait longer for the money!" LOL HANNAH!!!
I love how you guys talk so openly about questions that can be hard to ask.
To the people who actually think that she is dating Shane for money, you obviously don't know love. Love does not judge, love doesn't care about looks or disabilities or even about how much money a person has. Love has no boundaries. If you have ever felt true love, you would know that and wouldn't question their relationship. ✌🏽
Hannah when you are in a really hearty laugh you typically nuzzle your face into Shane's "diaphragm" and I just want you to know it's just gotta be the cutest thing next to your "Okay.." 😂💖
P.S. Shane, the extent of her sciencetific knowledge is evidently stronger when the topic of concern is You. 💖
None of us know how long we're going to live; however long you've now one another to spend time together. That's so much more than a lot of people who struggle to find love/a companion endure. Your positive energy is an inspiration and I'm so glad I discovered your CZcams channel 🌺👍🌈
I got the “my life expectancy has changed” video on my recommended and I was terrified to watch it thinking it would be bad news, this video really made my day.
God I love the two of you, you make me liteeerrallly laugh out loud.
I just discovered your channel, and omg, you guys are great! Not only am I learning so much, but your personalities together are magnetic, and the jokes, and the way you make something that could be so depressing, so much more then that. Great job you guys! I can't wait to see and learn more!
Love ❤️ you guys and you don’t have to explain your relationship to anyone!!! People marry for many reasons and companionship has Always been number 1 I think you both rock 🙌🏽
Well said!
When I watch the two of you the first thing in the morning, you make my whole day brighter. Thank you!
😂 I love that you can find humour in some of the absolutely senseless comments you guys receive!!! It's so amazing that this has become available. Wishing you all the best with your treatment!!! Live long and prosper!!🖖😜
My sister Nancy, also SMA Type 2 and way before Spinraza, lived to 43 from 1950 to 1994. One of her doctors said that he believed that Nancy lived so long because she had a loving husband for 25 years. I have no idea about the science behind it but I firmly believe that having love in your life increases your life span - and that is even before the Spinraza. (Couldn't someone come up with better names for drugs? Maybe something like SMA-Away!)
IKR! 'Spinoza' like who the hell names these drugs 😂
I just love how y'all can joke and laugh about the negativity that comes your way! Love your channel! 😻
I honestly don't know what I did with my days before I discovered you two. Such joy. Much love to you both. ♥️
"so hannah? What's your life expectancy"
"I used to think it was longer until I started dated you, now it's probably shorter, from Inhaling all the burps, like CO or whatever"
😂💀
@Twisted agent you k ow what I find even more irritating?......
Plot twist: blah blah blah
And
Guy in the video :blah blah bla
Me:
Batman:am I a joke to you?
R/whoosh
My god all this stupid illiterate teenage yank shit makes me want to punch myself squarely in the face.
@Twisted agent "Yep.... that's what she said.. we all watched it...
Ill never understand these comments on videos... they always trigger me cuz you're just saying a quote from the video....
Not adding anything to it whatsoever...."
@Twisted agent well I quote funny things from videos sometimes because I laughed a lot at that part. It gives credit to a joke. Why shouldn't I give feedback to the most hilarious part of the video? Comments don't have to be anything special. And they actually support the creator. So what is wrong with that?
@@BenHall289 Any of the
"she protec"
"she attac"
I''ve lost respect for myself just typing that much.
Love you guys! No matter what goes on you’re always making everyone’s days better 🙂
I really cant remember how/when I came across the 1st video I watched of yours, but Im addicted. No seriously, I need an intervention!
My family doesnt even ask what Im watching anymore. When I laugh so hard repeatedly at my phone...they just know.
Love you guys!
im so glad you have many more years ahead of you Shane
Learning that Shane has a normal life expectancy is the best news I have heard all day.
Your casual attitude about being disabled is incredibly refreshing and progressive. Love these videos 💘💘
I watched the short documentary that was the first thing that came out about Shane, before he met Hannah. And watching his family and how they dealt with his condition when they still thought his life expectancy was short was so awesome. It showed 3 men that all should be emulated by other men. His father who is such an awesome and loving dad. His brother who selflessly dedicated himself to Shane, and Shane who fought this disease with such grace and humor. All three “alphas”. And I’m saying that because I don’t really believe in alphas but if we are gonna use that concept then we need to rethink what it means. And those 3 men are what we should define as alpha. Selfless love, having a positive attitude, and deciding to live life to to fullest when presented with hardship.
I absolutely love your sense of humour Shane and Hannah you both make such cute a couple sending my love to you both I couldn’t stop laughing at your jokes