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Meet Shane, live life to the fullest | My Last Days

Meet Shane, live life to the fullest | My Last Days


Hey SoulPancakers how you doing, Rainn Wilson here as you know mostly on Mondays, we have
Metaphysical Mondays, we have celebrities sharing their thoughts life’s big questions but today is a
different kind celebrity a very special event I want you to meet
an extremely courageous inspirational and kick ass young man named Shane Burcaw He is hysterical, he’s funny smart grave amazing and this this story is gonna blow your mind the
video is a little bit long so stick with it to the end you’ll be
glad that you took the journey please meet Shane Burcaw Alright that’s awesome Shane. That’s awesome, you just want to keep looking at it? Just forever, yes. Just stare at it. *laughter* Thank you so much You’re Welcome. Have a great night man. You to buddy. My name is Shane Burcaw and I have a disease called spinal muscular atrophy ah which is a form of muscle dystrophy, that in basic terms causes my muscles to deteriorate as I get older. most people with my disease die sometime between like 20 and 30 is like a rough estimate my parents
noticed it when I was really young because I wasn’t progressing physically the way other kids were, um so where other kids were started to crawl and reach for things I was happy to sit in one spot and hang out there for the day. I rely on other people to help me with pretty much anything from picking things up to going to the bathroom anything that an abled boy person does really without thinking about. What that means today is that all my muscles are extremely weak. Except for my penis. Sorry I had to *laughter* Shane is ah… is a inspiration daily inspiration for me funnny intelligent, sarcastic, to the core, and ah a magnet. I envy him you know, his capacity to make friends and to understand people Institute change is incredible thing for ah a kid his age, let alone his
disability if I lose my mind I’ll remember that moment we had a diagnosis from a pediatric neurologists who said spinal
muscular atrophy was his diagnosis, one of the characteristics there is no electrical activity fire across the
muscle synapses I asked like any parent would, Doc is he, is he ever going to walk and the doc said no probably not and after that is was just kind of white noise That evening, put Shane to sleep and the brevity today kinda came down on
us it was like standing on the edge of an abyss, and you could look down and let
it suck you in or look up and rise above I think ah looking at Shane you can see what choice we made Found his blogs randomly and decided to email him Yeah I just thought we would be good friends in real life So yeah I emailed her back and, it’s been wonderful ever since. I’m Patt Hess, I’m one of Shane’s best friends, one of his longest friends
well it’s rare when I don’t see him or talk to him
every day I always see him at school, we always text and try to hang out. Play Fefa. You’re Manchester United? You’re falling friends. Son of a bitch. Game over. Hah! A penalty you have One shot We have the exact same sense of humor
and can never be in a bad mood with each other it’s just always a good laughing mood I am Shane’s older cousin there was never
a point in time when you know the parents were like Shan’es handicap or anything like that we would always
figure out a way to have Shane their and do stuff with us he never saw it
as like oh theres something wrong with me I’m never going to be normal because we wouldn’t let him because he was normal he’s just like all this in fact probably way more intelligent then all of us too we laugh pretty much whenever we’re
together there’s a joke being cracked or just a
reference being made that we find funny we just like to focus on being funny the moment we’re in right now focus on
that. Our problems we’ll figure it out later I feel you’ll find with all of my friends that we’re all really good at making fun at each other and ourselves we all have that ability to laugh at our selfs.Which is you have to have that. I think my sense
of humor probably came from my dad and the reason
I say that is I’ve had it pretty much my whole life.
Well let’s see there’s breathing sex and laughter not necessarily in that
order laughing, its a part of me its a part of my family, laughing at
ourselves laughing at each other that’s just part
of the day I think in my case what I’ve lost in like physical abilities, I’ve made up for in my my whit, that sounds so self loving. If I had to deal with my life and my situation, without humor. Ah I would be in a very different place. Yeah it it’s a coping mechanism, who cares His look at everything is amazing. I don’t know how he does it. I try an have the same attitude even though its not even on close to the same level He never looks like something’s bothering him its, its amazing. And I just try to be like him honestly. Their part of everyone’s life that truly just blow and its about how
you react to that Which defines the quality of your life I don’t use humor to avoid thinking about the bad stuff in life, I use it to make the bad stuff less bad I don’t know what I would do without my family and the support system that they offer their all so much there for me and from a very young age my parents taught me that yeah your life is going to be different your
not going to have it as easy as some other people might but life is what you make of it and you can be happy or you can be sad you do what you gotta do when you have
kids um you raise them above your
shoulders and in Shane’s case on it just takes a little more lifting to get him up. Taking care of him basically just came second nature from
like the day I was born. Like I don’t even think
about doing this stuff i do anymore I kinda just comes he comes first and then I’ll take care of my self and I don’t really like think that I
just do that. We’re blessed with 2 amazing kids Shane is the brains and
Andrew is the Bronze the two of them together are an amazing pair. I heard my brother and my mom talking once about what Andrew wanted to do for college and Andrew said something like well I really don’t want to go away because I want to stay here and help out with Shane I really thought that was more important
than like doing what I want to do and like go live my life and it was certainly a hard
decision to make but I eventually came to the conclusion
that it’s not like I believe in forever I can come home on holidays weekends by it was certainly probably one of the hardest decisions I
had to make. And I think that says a lot about who my brother is As long as I have the ability to laugh at the shit that’s happening to me it’s a lot easier to deal with I’ll never that like I wouldn’t want to walk if I had the hypothetical possibility I know there are some people who are in wheelchairs and say no my wheel chairs are apart of who I am and I wouldn’t give it up for anything I think that;s kind of bull shit a little bit because I would fucking love to be able to walk and run and skateboard and surf and do cool shit as long as being able to do that didn’t change me as a person I mean I wouldn’t give up who I am to do that. many in my friends take relationships
reviews been having a bath i hear all the
stories about how they met up with Miss Jones the now had a
great time that’s something I’ve never been able you on that I’m up to be in line it’s
not as shy of his own way then miss my friends nurse hi all smiles II away from half half not the zone on and sell and me chance in life develop them
islands and wetlands joins us out there sunday I’m going to find a job that
doesn’t care about the challenges the waffles
together hywell just net sales were I was there as is all about rules happen the mothers things that they’re she can’t do there’s a whole buncha
stuff that he can do two years and yeah I study a blog called laughing I really on another the a place where it. right some the final stories that
happened in my life just to make people laugh a toasted a
few signs publish their have i’d honey farms every
time my long hunt involved in this place
where I document everything this defense about my life
because my disability on Bossa & Visitors long all about my
life and that have over there have been some thousand followers our visions I’m tolls
and fungicides and stuff that he’s learned by being apart of this huge blog
community it’s just absolutely incredible how I
don’t even know what a block was when when he started blogging I hope
that he reaches a billion people same recognize first that he really have
the ability to do something with it and when it came down to was creating a
non-profit what the nonprofit is raising money for muscular dystrophy
research we promote a massive positivity with a simple message: laugh and cell
how it’s possible to live your life in a way that you may
have not thought of doing before on words your was a father’s offers in good more important laughing its infinite the
Maria earlier the situations that his disease than allowing him to
live out the full life it’s not fair to me but its most
likely knock beer good happy ending here I don’t think about it wud house I kids can’t physically ahead and the most I think about that is when
I’m like in bed at night if my mind startling running sometimes I
think about it but then and I just like hit me his whole message
like just take what you have in live it to the
fullest in in the future on going to be
physically worse off time now and I have this reach a ram years Matthew L where my family is yeah down to like who Christmas
dinner and I years and on not there at I think that rules the most hopwood I’m not how plus yes while you realize at years on tasaday as I have asylum acts of Aki have every reason in the world wake up every morning his life but got
VM and heaney any money my future incise wounds you know she
every day his last that spawns by when you live
with it it’s not posted as far as time left: arm there’s too much time to
go dwelling on that in my opinion is money Beach there’s just no time for
that I said the world people and univers so mine violently amazing that some time possibly flames nod yes the losses signs however I she also said i firmly believe God a despite my lisence
hi love life yeah I’m still ask him questions after I
believe one way or another I believe in God and believe that heaven is a baseball field the machine is running catching the ball claim
within I believe that having is unconscionable of used month I don’t wanna go a day without sharing
I’m just one of the few victims that he’s changed
in very positive way sis amazing I’m so honored and blessed even have met him thank you her making your personal and think time and such important thing that people
don’t realize how how little it that we actually have and somebody who
has touched a limited amount of time he can he can be like this like what can you do think we can you
really do in your life we all have problems in life some other
valves and I’m small but quality I V life Israel depending upon how you react to
those problems and so my jeans you know reach as many
people as possible and to laugh with them and
distances many people the well I’ll LIF the No yes just shool the time the last by yourself problems the craziness in
the world around you do you have a better time and I’ll horizontal was bobbled himself the slot like in I’m

Comments (99)

  1. He is engaged to be married!

  2. Breaks my heart seeing them all before he started his life saving treatment and met the love of his life. They genuinely didn't believe there would be a happy ending and look at him now😊

  3. God bless you and Hannah and your mom and dad. For the people who hit thumbs down…. you are stupid and have no heart or soul

  4. Shane you are absolutely wonderful!!! I,myself, was born with spina bifida occulta, but I can walk. Not well, but still I can walk. You deserve the best things in life and I hope you are always so positive and funny. xxxooo

  5. it is so weird seeing him without hannah

  6. Love Shane and his fiancé Hannah(: Everyone should watch their YouTube channel. They're beautiful people inside and out (:

  7. Why does Shane have such a baby face??

  8. Shane you are amazing you remind me of my brother he was my best friend he had Duchene muscular dystrophy when I watch your video I start to think that he was not diagnose correctly everything about you reminds me of my brother Phillip he died 10 years ago when he was 29 he was my best friend we were only 9 months apart always the same age for a little while I was born in 80 and he was born in 79 my son was born right before my brother died I miss him so much and you are a hero to me I don't know who you are but your story reminds me of my brother so much

  9. I am a muscular dystrophy carrier I was recently diagnosed with a very rare case of muscular dystrophy and I've been struggling a lot with severe muscle weakness in my legs my life has changed tremendously but I still keep going and fight and enjoy every moment I have with my son

  10. SPINRAZA WAZZUUUUUUUUP

  11. And this is how Squirmy and Grubs happened

  12. June 2019 just got engaged! 💝 Way to go Shane & Hannah (Squirmy & Grubbs). Happy, long life together!!

  13. People sometimes ask why God allows suffering….it’s to teach others how to love unconditionally and to elevate our own souls to deeper heights among many things. God NEVER does anything that isn’t ultimately good in the end. Bless you and your loved ones Shane!!

  14. stay strong boy.you are a blessing for the people who meet you.i hope people around you can be the same blessing to you

  15. I think he should do Lsd or Mushrooms. It really helps people deal with end of life and offers a great experience if in the right setting.

  16. The Subtitles are completely wrong,,why do we need them anyways?? They are all speaking in English,,,Hmmm very confusing,,He is a beautiful Human Being though,loved by all..xoxo

  17. And now he is getting married!!! 🙂

  18. Amazing family! You can feel the intensity of their love, so beautiful! ❤️

  19. Oh my goodness! These photos of Shane when he was little. So freaking cute!

  20. Shane your a superstar more so than any Hollywood movie star or rock star.

  21. I just love his daddy ❤️these beautiful stories really makes me want to help others 😢

  22. My daughter was born with a similar disease. God willing, I will care and love her everyday of my life.

  23. “My last days”..dude said on his channel he’ll live just as long as anyone. They totally milk views.

  24. Seems like he always knew the love of his life was out there. I always knew I would have a daughter and I did. Sometimes you just know!

  25. Shane your so bloody awesome!! I wish u all the very best in this world!! Xo

  26. zero comments? Awesome dude and I wish him well.

  27. He just got engaged to his girlfriend of three years. He’s doing very well actually.

  28. His dad's description of heaven 😭

  29. Shane has found his girl, a lovely, caring person named Hannah, who is as beautiful inside as she is outside. They are engaged, and are so happy. With his humor, and Hannah by his side, their future is bright. I wish them both the best.

    There's been a new development in Shane's life, the medication Spinraza. This drug has changed his outlook as far as his lifespan goes, now his life is open ended as to time, which is wonderful news.

  30. we have no right to gripe, we don't know how lucky we are, what a brave little guy .

  31. Thankyou for this vidéo Shane. You truly are an inspiration

  32. And now he's engaged to be married

  33. Fun fact: Hannah, his fiancee, found him from this video

  34. I would strap a mower deck to that wheelchair and make that lil goblin cut the grass.♿

  35. Is or was his Dad an actor? His face looks familiar.

  36. Oh my goodness Thank you so much for sharing a glimpse of this amazing young man Hell I fell in love with him,his story has touch my heart! God bless you guy's😊

  37. I just LOVE him AND his Fiancé!!!!!!
    THEY MAKE AN INCREDIBLE INTERABLED COUPLE!!!
    I pray that they live for many more years and have babies!!!!!!!!

  38. I ALSO WANT TO THANK EVERYONE WHO HAS CARED FOR SHANE AND MADE HIS LIFE WORTH LIVING AND I PRAY THAT EVERY DISABLED CHILD CAN HAVE A HAPPY AND MORE IMPORTANTLY SAFE UPBRINGING BECAUSE EVERYONE DESERVES THAT ESPECIALLY PEOPLE WHO CANNOT FEND FOR THEMSELVES!!!!!!
    AMEN, AMEN & AMEN!!!!!!!

  39. Poor man, but I can't stand him and his girlfriends channel. She is just weird to me all together.

  40. Not only does he have a girlfriend of 3yrs they jus got engaged! Beautiful Hannah is so awesum and he is on a new treatment that is supposed to stop the progression of his disease! Life is wonderful and I am so glad he isn’t goin anywhere soon! ☮️❤️🤗

  41. How shames life gone ABOVE AND BEYOND..he's life's totally fulfilled with love…a lot of people don't have that opportunity..💙

  42. He's now engaged to Hannah!!! I am so happy for them!

  43. Shane I am so happy these weren’t your last days and that you continue to light up the world with your humour and wit. Bless you and your amazing family. Thank you for your insights and for sharing. ❤️

  44. and they  will live happilly forever

  45. He needs to teach classes on COPING. We have soooo many professional patients who have self induced illness (obesity) who whine & expect everyone else to cope for them.

  46. wow i love watching Shanes family on here since i havent seen them on squirmy and grubs channel . I can see where his personality and charm comes from . I can see he was raised in such a loving and supportive family and now he is blessed to have Hannah. I believe all the possitives outweigh his disability.

  47. I love Squirmy & Grubs

  48. He's literally still alive and well ..

  49. And look at him now with his beautiful girlfriend! Go Shane!

  50. What an awesome bunch of family and friends Shane has. God bless you Shane. You are a gift from God.

  51. So much cursing Shane! Hannah, wash his mouth out! Love S & G! Please don’t stop!

  52. What a wonderful family. They all bring something to the group. Shane is awesome. His brother is too. The parents molded them both and that says soooo much!

  53. Love you squirmy!! PS, squiggle squiggle!! LOL (**Insider with squirmy)

  54. What an amazing Family. What an amazing Boy! Thank you for sharing.

  55. He is a literal ANGEL! <3

  56. Wanted to say lucky guy to have people like this in his life….the I realized lucky people to have him in their lives.

  57. All this cussing….like come on, then the cousin had the audacity to use the G-d word. The IQ’s must be that low that they can’t think of actual words.

  58. His father is so well-spoken!!!

  59. I love Shane I watch him and Hannah all the time.

  60. He did find that special girl! Hannah! Dwight!

  61. Take time to laugh……I like that. Keep on pushin' Shane.

  62. Hannah, you'd better watch out cause I've got my heart set on Shane!!! What a great guy!

  63. The captioning needs to be fixed. I doubt very much that funny stories translates to fungicide.

  64. I just found your channel. You two are amazing. This one is from 2013. Are you still making videos? I hope you are both well.

  65. the video that I found first was with a girlfriend as his caregiver.

  66. Thank you for sharing such a beautiful love story.

  67. Such a beautiful person x hugs

  68. Shane was so young on this video. He's totally awesome and yep he found his soulmate Hannah.

  69. It's awesome to know that soon (6 plus years later) he will be adding the role of Husband to his life's resume! XOXO

  70. Question–Which bear is best?

  71. shanes voice is much clearer in this poor guy its the muscles in his mouth likely getting worse,,,

  72. Lol Shane’ is so hilarious and in all honestly I forget he’s handicap !since I came from his and Hanna’s channel I just like watching them and I watch them but I mostly just hear their video as I’m working or play it in the background and also this is proof y I never believe drs they aren’t God and they can’t say oh u only have so amount of time to live if they ever told me that I’d be like ok sure and walk away

  73. I think the people who are in his life should be commended,just as much because it’s very difficult to care for someone’s every little need. Blowing their nose to wiping their ass to helping them cough up phlegm balls. I’ve done it and it’s the most difficult job I have ever done. But I learned what I was made of.

  74. You are a gift from god who is a gift to us so we realize how precious life is..You are alive ..LIVE SHANE…….LIVE.

  75. You can tell he gets his character from his dad. Im sure his mom is great too. Noble parents

  76. Shane is a strong, funny cute young man. Im moved to tears seeing his dad gaving him a shower . This family and his friends has so much love for him. Shane you are a wonderful human being. Keep smiling. Stay well, be strong and be bless.
    To all the daughters and sons all over the world. No matter how you see it, Accept it that
    A Father and Mother Love Never Ends. 💙
    Frm Penang. Malaysia.

  77. THANK GOD HE FOUND HANNA. Lovely couple. 🥰

  78. Eat more.drink more fluid.

  79. This is old. He is married now.

  80. Shane is a beautiful person inside and out I just love watching his videos he always makes me laugh, Thankyou Shane you shine like the sun 🌝

  81. Shane you’re the BEST!!

  82. My son had look in his eyes one of suffering Dr's speak death over people Jesus doesn't he looks look E his parents. I'd be very serious concentrating is gard they look so similar to my sons family.its the bond between brothers.why do you want God to dam his perseverance? You need to read about isreal has he been baptised? If I ask them to pray for his deliverance. Jesus is there sin destroys the order. I did realise. Lost my parents as young they both left us. Cry out of love. World is crazy. Time is running out see Zev Porat.i wondered why I was lead to your story.

  83. So happy Shane found Hannah ❤️ 💕😍❣️

  84. I don’t I don’t know where I can play this for you inspired me to be a better person today and not give up because there is my name many times many many many times is my disability good I just wanted to give up and say you know what God take me to heaven but then God comes right back at me and says no you belong here OK you have a clear you have a place in my heart please don’t go in my friends are like the same way and they want me to be bloggers and you to present

  85. Nick Vujicic without arms and legs asks “What is your excuse?” He has a beautiful wife and 4 children. He is amazing also.

  86. I HAVE CP I RELATE TO SHANE

  87. Such a brave guy …! He deserves, at least, to have his words transcribed accurately

  88. I wish I had his strength. He had faith and I an faltering. Please advise ya'll if you are so inclined to. God bless ya'll

  89. To see where he is now is incredible! Engaged and living his life to the fullest! Love you so much Shane and Hannah!! 💖

  90. Thank god, these aren’t his last days. Spinraza hopefully saves him

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