My Life Expectancy Has Changed [CC] / Squirmy and Grubs
Vložit
- čas přidán 15. 07. 2024
- Receiving a life-changing medical treatment is scary. Shane describes his fears about death and his future as they relate to his new Spinraza treatment. Life is beautiful and bizarre.
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!
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.
Enjoy! And please share with your friends if you do!
You can follow us on Instagram at:
Shane: shaneburcaw...
Hannah: hannahayl?...
SUBSCRIBE for more! 👉 / squirmyandgrubs
[Music Credits]
Track: Kozah - Travel Again [NCS Release]
Music provided by NoCopyrightSounds.
Watch: • Kozah - Travel Again [...
Free Download / Stream: ncs.io/TravelAgainYO
“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.
Pure love ❤️❤️
Isn't that a kinda disrespectful comment for her to say though?
MrsPolidori it depends on if you're joking or insulting and depends on how the person takes their comment.
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.
@@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.
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.
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.
@@fixitallpaul4847 That's so scary!! I'm sorry that happened!!
@@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
My grandmother used to say: "you'll never know the day nor the time".
We're all gonna die. Just part of the life cycle!!
"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.
“Big things take up a lot of brain space with their..... bigness.” A light hearted yet very very deep observation.
Y r d bl
What a beautiful way to look at this situation.
i am so sorry you both have to go through this
@@josephinepeyton3044 what
@@kimmie965 I'm sorry that was not a comment.
'the slightest of mistakes could seriously damage my... Aliveness'
😂😂😂
I would say aliveness is one of the most important things in one's health :D
Not Funny 😂
i felt that though😂
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.
You asshole!!
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.
Samantha West I'm sorry to hear about your lost. I'm sure he is there with u. ❤️
lee bags awww thats so kind of you thank you very much 😇
I’m so sorry ❤️🙏
My heart is with you
I know you don't know me but i know your pain very well, my DMs are open and i'm wishing you strength.
Shane, I literally never comment on CZcams, but you are a damn inspiration. Your courage, honesty, and positivity are really moving. I wish you and Hannah the very best!
Tim W I feel the same way. If your mom is a strong leader, basing decisions on science. She’s awesome!
@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.
@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.
Yes!!
@Maddeline Joa what money does he have that makes you think that hannah want?😂 I just find it funny.
“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! ❤️🙏
"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.
Thank you for this comment. Goodness. I'm taking a screenshot to remember and refer back to this.
@@micalah8282 I just did the same thing ...wow
I can relate 100% Chris
If I could LOVE this I would. Thank you Shane and chris Rogers for your words.
Omg I just now read the other comments. I screen shot it as well to keep.
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
cute? Hell no! Adorable? HELL YEAH
@Seckswithatoaster what the 😂
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. ❤💕💖💓🌺🌹🏵
Don’t forget hella sarcastic
She flirtin smh
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!!
yea
Shane, may you live a long and wonderful life with Hannah. With the evolution of science, medicine, and technology, your future is looking up.
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.
Is there a gofundme?
@@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.
That's awesome!
@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.
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.
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
Huh, never thought of it this way...
Beautifully stated...
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!
Yes Arabic, unless someone is in a relationship like that, they can't understand.
@@jamie.k.nakni817 exactly! 💜💜 14 years here! 🙌
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.
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.!
@ape shut the fuck up.not everything is about sex moron.
But he Is cute, extremely intelligent and that is soooo sexy!
Amen!!!
@@monke4028 ur just JEALOUS !!!!
@@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.
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
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.
@@Branman345 Shane needs free time, too.
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.
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
Your Ego ;
Im glad you guys made it onto SBSK because i wouldnt have known about you before
Me too
Same here.
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
Be thankful CZcams allows this channel to have comments. CZcams took SBSK comments away
@Make it lucid
It's been a few months since I watched it but SBSK made a video about CZcams 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.
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. ❤️
❤️❤️❤️
The power of people being authentically themselves is just glorious. Thank you.
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!!!!
Hope you're better now.
Kaelan The Urban Explorer he was expressing positivity in means he finds to be beneficial. Don’t be an ass.
@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...
Kaelan The Chuck E Cheese Fan your the one using it. The guy was only saying God Bless to express positivity. Goodness
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
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!
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
@@tacoman6293 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.
@@skinsey85 u really didnt have to let me know u just want to be right about something on the internet
@@tacoman6293 lol what is your problem?
Edward Garcia she was SUPER respectful and kind. You’re being rude.
“Eat your feelings!” 😂 You guys are too fricken adorable. What a blessing you guys found each other! Praying for your both always. God bless! ❤️
"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.
I love the dark humor. I’m cracking up. You two make a great pair!
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!
❤️
❤
God bless u
💛
♥️
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.
Everyone is too sensitive these days. Humor is the best way to deal with life's challenges.
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.
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.
@@Sara-gl8ue that's how I look at it.
YOU DO NOT KNOW THESE PPL!! quit speaking for them weirdo
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!
Wish u all the strength❤️
"Atrophied little giraffe boi" 😂😂😂 damn Hannah
Noah Paez 🤬
They should definitely get tshirts made!
Sweetly & Savage
“an atrophied little giraffe boy??” i was cracking up 😂😂😂😂
Gabrielle Gonzalez i love that they haze each other. you can see how comfortable they are around each other.
She bogus for that lol
I love how he said "man" before she even said she second word in that sentence!
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
🤮
I'm so happy for you Shane. I'm glad your life expectancy is going to be longer. You're an awesome guy!!
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 ❤️❤️
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!
Ohü
@@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.
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.!! 👍🏻
@Burger Boss Yeah she'd take him over you. My condolences. May you pop your cherry one day without paying for it.
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!
Does it repair or just prevent progression?
Shane! You are owning this disease, and not letting it own you! The Lord is using you to help a lot of people!
People who make hateful comments are ignorant, sad people, You are a wonderful couple, and I am glad I discovered your videos.
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.
Ya you two alright beauty and the beast lol
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 !!!
Ditto!!!
Same
Totally Agree 💯
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.
they were smiling so much that he was getting help that they misclicked
Nicolas Muro sock puppets and bots
They trynna do a thanos and make it perfectly balanced. As all things should be.
@wes bd and if you've a. Rain you use your freedom of speech wisely, or it makes you look like an idioy
Just trolls, Every video on youtube good or bad has thumbs down. on My video they are completely ignored.
You two are a breath of fresh air in this sick world 💕🤗
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. ❤️❤️❤️❤️❤️
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.
Amen !
Amen yeah as well 👛👜👝🛍🎒
@@brucethecardcollector You are being very sick...
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!
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.
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
Zoe Hartwell I’m so sorry, God bless you and your family ❤️🙏
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.
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...
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. 💚
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
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
These two are just incredible. What a wonderful friendship. That is what we all want. Our best friend and soulmate. Keep on trucking!
“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.
I love your love for each other.
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 💞
Just found this channel, you’re a true bad ass my friend. You are an inspiration. You two are lucky to have each other!!
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.
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❤️
"an atrophied little giraffe boy" I nearly spat out my coffee 🤭
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😇
Hello how are you doing 👋👋👋😀😀
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
I started following your blog a few years ago and remember when ur first book came out! I’m so glad that all these years later you are in a happy relationship, living away from your folks, and traveling the world! These vlogs have really taught me a lot about interabled relationships!
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
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.
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.
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.
A friend of mine lost two daughters to SMA ( before they were 5) seeing you doing well makes me so happy. I wish you a long and happy life. God bless! ❤️
looks like we have the same medical issue
shodleech i am so sorry you both have to go through this
Hey y’all this is my first comment ever on CZcams. I love the videos and appreciate the effort you put into them. You have made a difference in my life. Thank y’all.
When he said I have some bad news, my heart dropped. Please don't do that again😂😂
Just watched this. Shane seems to be the sweetest, love his smile. 😊 Sending so much positive energy to both of you.
'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.
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.
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.
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.
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.
Hello how are you doing 👋😀☺️😀😀😀
I’m praying every day that you keep on making progress and have a long and happy life with Hannah.
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 ❤️❤️
OMG. I love you guys. I find myself starting my days with you to lighten up and laugh and enjoy time with you. Shane, this episode is brutally open, honest and vulnerable. You've successfully lost your filters.
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!
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.
Spinraza is phenomenal! I have a friend with SMA type 1 who is responding incredibly well to it. Best wishes to you!
I am blown away by your bravery, and your indurance to deal with all the issues you are faced with. God Bless You xoxo
I've watched your show a few times. I just noticed this was two years ago. I'm glad your still here. And what a beautiful couple. Keep it real and keep fighting!
Have you considered a gofundme that you could tuck away as a "in-case I have to buy this medication without funding" emergency fund.
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 ❤️💜
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. ❤️
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. ♥️
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.
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💕❤️
Hi I just found you recently. Several years ago I lost a friend who had the same thing you have he lived to be 60 years old.I hope this truely helps you and others with SMA.
I am so absolutely grateful that I found this channel and can not wait to see what the future holds for you two!
She's so protective of him. It's adorable. :) Love you guys!
you guys are the cutest ever- shane you’re such an inspiration. like so much i might cry. i don’t cry over inspiration. but i feel lucky to have found you guys
WHAT AN AMAZING UPDATE !! They have come so far in Research. This is just Great !
This update deserves many smiles and a celebration !
Big hugs my friend !!
Lisa 🌺
Myrtle Beach SC 🌴🇺🇸
Love you Shane and Hannah. Tons of prayers for y’all and can’t wait for what’s to come!
Thank you for sharing your story with the world. We can’t begin to imagine what you’re feeling. I pray for your comfort and happiness!
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.
you have an incredible amount of strength ❤️
💚
❤️❤️
@@abilevitt3334 Hang in there. You are thought of often 🙂
You are doing amazing! You will always have access to the drugs, you will never run short. You got this!
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
Perfectly said. I so agree with you!
Sending you love and healing. I saw one vid of y'all's and I was so touched at how happy and connected y'all are
Love you both! Stay well!!
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
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.🙏🙏🙏🙏🙏😘😘
I get so happy everytime I see you two in videos... I'm like, YES TRUE LOVE & CONNECTION IS STILL OUT THERE... and I'm soo happy that spinraza helps prolong that for the both of you!! Xoxo
I am so happy that you get to receive Spinraza and that it is positively affecting your life! Having DMD, I can understand how amazing that is. I love these vlogs. Side note- Please talk about favorite movies and TV!
Shane I really want to express my admiration for your resolve and motivation. As someone with health conditions I know all to well how mentally emotionally physically and spiritually draining this can be . Poor health is a daily grind. Keep on keeping on my friend and may god bless you x sending much love x
Hi Shane and Hannah,
I've been following you for a few months now and admire your perseverance and the love you have for each other. I myself also have SMA type 2 and I will also start Spinraza within a few months. Now I am in the preliminary phase. With me they are going to sting in the lower back. Why don't they do this to you? I am happy to follow you and hope that you will benefit from the treatment for a long time! Love from Breda, the Netherlands
New fan here. Love you guys so much. You are incredibly eloquent and kick ass!
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!!!
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.
I’ve been catching up on your journey and I’m praying for you. You are a super hero! Bless you both and love you both!
I simply adore you two. I find so much encouragement thru you. I have Bipolar 1 and sever anxiety. I understand your fears and challenges. All will be well. You have a huge support team. When I have paddle shock treatment I'm petrified I'll have a mental break and wake up in a mental hospital. I not complaining, just sharing your not alone in more ways than one.🙏