The Teenager with Vanishing Bones | Living Differently

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  • čas přidán 21. 04. 2019
  • Natalia was born with a rare disease called idiopathic multicentric osteolysis, which means her body is slowly absorbing her bones - literally making them ‘vanish.’ The 14 year old deals with constant pain, and it impacts everyday tasks like eating, dressing and going to school. Yet Natalia is determined to not let the condition dictate her life. She has developed a passion for art, is a top student at school and loves to socialise with her friends.
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Komentáře • 1,3K

  • @Shervy2k
    @Shervy2k Před 5 lety +7348

    First we saw the girl whose flesh turned into bone until she couldn't move and dies....now we have the opposite. DNA is amazing and terrifying when mutated

    • @jenniferwooten6554
      @jenniferwooten6554 Před 5 lety +402

      Shervy2k I never realized just how complex human anatomy & physiology is until I went to nursing school. During A&P I and II, microbiolgy, and pathophysiology it was hard to wrap my brain around all of the different processes happening both inside of us and outside on the skin every second of every day and just how much can happen in less than 1 second. And even though logically I knew this was the case, I found myself totally overwhelmed at what it takes for me to even just sit here and type this comment. There are SO MANY PROCESSES occurring ALL THE TIME to maintain homeostasis that we never even know about, like the multiple buffer systems in kidneys, bloodstream, & respiratory system that, through the manipulation of carbon and bicarbonate, constantly maintain our pH balance or the continual regulation of body temperature & hydration by the hypothalamus via osmoreceptors, hormones, and negative feedback loops or how we have indepently functioning cardiac cells that work with the different cardiac pacemaker backup systems put in place to ensure that if the SA node that sets the heart rate poops out, the next pacemaker will jump in & take over, albeit a tad slower but nonetheless fast & hard enough to get the job done. And if that one quits too, there's yet another pacemaker in the system that will take over, once again a bit slower but enough to buy some time. And all of them work together to ensure the heart will continue to beat & pump the continual systemic delivery of oxygenated blood to our organs & extremities while receiving the return delivery of deoxygenated blood that it will transport to the lungs for re-oxygenation. While learning about genes, chromosomes, DNA & RNA structure and function, I marveled at how it is so very efficient and precise while simultaneously having ZERO room for error because just one tiny little alteration in just one tiny little gene, whether the chromosome is missing a gene or an extra gene is present or if one single nucleotide is out of place in the massive sea of DNA chains contained within the nucleus of human cells, it results in absolute and total chaos. I find the science behind the human genome SO RIDICULOUSLY FASCINATING, which is what steered me in the direction of nursing school. But what's even more fascinating to me is how people who have been dealt the worst genetic cards are often the strongest, genuinely happy, and most well-adjusted individuals. It makes me take a hard look at how I can so easily slip into a place of ingratitude and "poor me-isms" over the most insignificant things. Instead, I should be more grateful for all of the really rad things in my life. When I take the narrow focus off of what little negative there is and redirect a broader lens onto the exponentially larger amount of positive things that life has bestowed upon me, it's impossible 100% of the time to stay stuck in the negative for it is impossible to occupy both spaces at once. The manner in which this girl & countless others who have seemingly debilitating chromosomal anomalies or degenerative diseases with no cures or treatments to speak of handle, process, and adjust to their situations is nothing short of awe inspiring. And I mean that in the most respectful way possible because it's often a huge struggle some days for people without these diseases to be okay in their own skin and remain positive and kind and happy, myself included. I can only hope to someday gain even a fraction of a shred of a molecule of the strength & grace with which they carry themselves through life I'd count it as my greatest blessing.

    • @madaraaradam7799
      @madaraaradam7799 Před 5 lety +46

      @@jenniferwooten6554 Your comment is bloody amazing! 😊 I had to say it!

    • @jenniferwooten6554
      @jenniferwooten6554 Před 5 lety +14

      @@madaraaradam7799 nice! Thank you!!! ❤🤘😊

    • @Truth2power5848
      @Truth2power5848 Před 5 lety +39

      All white people are a mutation of black people and men a mutation of woman if you don’t believe please research and don’t get offended if this challenges everything you thought you knew mutation has been going on.

    • @NJSMKMMS
      @NJSMKMMS Před 5 lety +7

      @@jenniferwooten6554 It's the struggle that makes the difference in their out look.

  • @haleyt3754
    @haleyt3754 Před 5 lety +3888

    All I could think about was how pretty she is. Her smile is gorgeous and I love her hair!! She’s so kind and seems so gentle :( I wish the very best for her

    • @Alex-qh4db
      @Alex-qh4db Před 5 lety +42

      I came to comment something about her smile, too. Her demeanor is so kind and strong.

    • @MoniqueAnn
      @MoniqueAnn Před 5 lety +7

      Haley T omg same! Was looking for comments on how beautiful she is!!

    • @kuzupekostan4778
      @kuzupekostan4778 Před 5 lety +7

      ugh same!!! she is so beautiful

    • @DapperJazz
      @DapperJazz Před 4 lety +7

      My first thought was how freaking pretty she was that it made me mad
      Clear face, straight soft hair.
      Not fair dudes.
      I’m a teen too and I have so many blemishes my face legit just a peachy sky of red stars.

    • @nurqiqi1331
      @nurqiqi1331 Před 4 lety +7

      DapperJazz try being her and let see if u will still say life is unfair

  • @hollybollybingbong_
    @hollybollybingbong_ Před 5 lety +635

    Friendly reminder that you are also allowed to have bad days, or cry over small things. It isn't a competition on who has a worse life.

    • @Formerlywendytestaburger1621
      @Formerlywendytestaburger1621 Před 3 lety +49

      yes! i am tired of those comments

    • @rachelknight3433
      @rachelknight3433 Před 3 lety +15

      YES! THIS!!

    • @tanie3543
      @tanie3543 Před 3 lety +77

      Yes it's so dumb seeing comments like "I'll never complain about my life again" like . No. You can do that. Just because someone has broken their hand, it doesn't mean you can't cry over your broken finger.

    • @helenageerts2115
      @helenageerts2115 Před 3 lety +8

      This is really friendly of you!❤️☺️

    • @GabrielleTollerson
      @GabrielleTollerson Před 3 lety +3

      this 👏💖

  • @ellesydney_
    @ellesydney_ Před 5 lety +1869

    I met Natalia on the first day of kindergarten, and she is definitely the strongest girl I know! I admire how positive and happy she is despite her pain. When I’m going through something that might be getting me down, I think of Natalia, because if she can be positive and focus on the good in life, so can I! I’m so thankful that I met her and have her as a friend.

    • @daisypopcornprincess2341
      @daisypopcornprincess2341 Před 5 lety +56

      LaHappyDapp ikr on everyone of these videos there’s someone who claims to know them

    • @fattcheese3782
      @fattcheese3782 Před 5 lety +40

      Press (X) to doubt:
      XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

    • @ploofthesheep2887
      @ploofthesheep2887 Před 5 lety +8

      That's really nice.

    • @CoolCatK2222
      @CoolCatK2222 Před 5 lety +66

      I mean if you think about it, if you were friends with this beautiful girl, and she told you people made a documentary about her, wouldn't you watch it?

    • @shineinstars
      @shineinstars Před 5 lety +4

      no one knows if this is a truth or a lie except for the oc.

  • @Superfandangoo
    @Superfandangoo Před 5 lety +2213

    Damn this is terrible for this young lady. It amazes me how well people with similar painful life changing/threatening conditions cope as well as we see them.
    A brave lady

    • @heyguys6741
      @heyguys6741 Před 5 lety +5

      Naughty Finger sorry, but I love ur name and prfp

    • @charleslindberg829
      @charleslindberg829 Před 5 lety +1

      @@heyguys6741 a good pun, for sure.

    • @nsr5961
      @nsr5961 Před 5 lety +1

      Naughty Finger she gets a lot of therapy. I’m sure those psychologist do come at a cost for her though.

    • @jakotheclown4471
      @jakotheclown4471 Před 5 lety +5

      How well people cope?
      Well, they have no choice...all we see are the happy parts on the documentaries, we dont see the day to day life, the times where she isnt "strong"

    • @Superfandangoo
      @Superfandangoo Před 5 lety +1

      @@jakotheclown4471 Obviously

  • @MissCC
    @MissCC Před 5 lety +1737

    The Wonder Woman mug is fitting

    • @endroholic7161
      @endroholic7161 Před 4 lety +1

      Nope,Shes short

    • @emocookiemonsterDx78
      @emocookiemonsterDx78 Před 4 lety +27

      @@endroholic7161 what's up with all the trolls I keep seeing now a days 🙄🙄

    • @eliseangell7763
      @eliseangell7763 Před 4 lety +2

      @Tobby ._. Woah woah woah, I agree with your main point that they are being an ass but you do not have to go that far

    • @eliseangell7763
      @eliseangell7763 Před 4 lety +2

      @Tobby ._. Yes they do need to face reality, but it's unnecessary to target someone and call them out on something that might hurt. And it's not facing reality by being insensitive, it's being mean to someone that's being mean to someone else. No one wins that way

    • @eliseangell7763
      @eliseangell7763 Před 4 lety +1

      @Tobby ._. yeah I get that. I've been working on managing my CZcams comment anger and panic responses too lol🤷😅

  • @elisamondragon2849
    @elisamondragon2849 Před 5 lety +695

    OMG Her teacher looks so young, I thought he was another student!

    • @Jessie_BT
      @Jessie_BT Před 5 lety +39

      I'm glad I'm not the only one! My jaw dropped when it said teacher

    • @melissadurante1450
      @melissadurante1450 Před 5 lety +7

      Me too!

    • @rosalindacampos9055
      @rosalindacampos9055 Před 5 lety +16

      I had a surgery on my leg a few months ago and let me tell you all my doctors and specialist are hella young i dont know why lmao , I'm 27 and they look way younger them me 😅 the first time a meet one of my orthopedist he was a Chinese guy doctor 15 year old looking 😲

    • @TheThetykoes
      @TheThetykoes Před 5 lety +36

      Asians man, asians

    • @psyke554
      @psyke554 Před 5 lety +1

      Same dude

  • @corgiluver8178
    @corgiluver8178 Před 5 lety +78

    “There’s more to you than this disease.”
    OMG girl ur freaking amazing.

  • @zenith5702
    @zenith5702 Před 5 lety +751

    Her art is so good I wish she wasn’t in so much pain

    • @soso3792
      @soso3792 Před 4 lety +7

      As a digital artist myself, I really love her art and admire her strength! I agree, I don’t want her to be in that much pain either, she’s an amazing person and deserves to live a great life :0

    • @chl4._
      @chl4._ Před 4 lety +1

      I can barely draw well a little

  • @antoinedoinell
    @antoinedoinell Před 5 lety +815

    Wow her strength and determination is so inspiring!

  • @BrianVelez
    @BrianVelez Před 5 lety +289

    I can’t. She has such a beautiful personality.
    I love it! ❤️

    • @baremax
      @baremax Před 5 lety +1

      I agree ❤❤

    • @___Zack___
      @___Zack___ Před 3 lety

      @Brian Velez You can't... What?

    • @Warhorse469
      @Warhorse469 Před 2 lety +1

      most people like this are beautiful souls because they don't take things for granted like most of us do.

  • @utsavimishra106
    @utsavimishra106 Před 5 lety +143

    This world is crazy !! I just saw a vedio where a beautiful girl is facing a disease where her body is developing second skeleton .....and then here this dear girl is suffering from loss of bones. ...so sad and contrasting
    May God give strength to everyone.

  • @milk-qh5zz
    @milk-qh5zz Před 5 lety +409

    Wow, she is so strong, and she is so happy. The more I think about this the more I realise how much things we take for granted.

    • @rashone2879
      @rashone2879 Před 5 lety +4

      True, we think we have some big problem because maybe we think our nose is too big or we don't like our thighs...but honestly, while she seems to maintain a positive attitude which helps with any medical condition, I'll bet she's not happy all the time. Meanwhile, look at her art...it is beautiful!

  • @JaydaAshlyn_
    @JaydaAshlyn_ Před 5 lety +241

    makes me wonder if somehow with research the mutation that causes her bones to dissolve can be used to help the disease that causes bones to form “turning people to stone” and vice versa

    • @picklerick9036
      @picklerick9036 Před 5 lety +18

      Jayda Ashlyn I think you’re on to something....🤔

    • @alexiskline870
      @alexiskline870 Před 5 lety

      Omg you can make a fortune with this idea

    • @roshpotter06
      @roshpotter06 Před 4 lety +15

      Jayda Ashlyn it’s possible, but it depends entirely on the process that causes it. If they are really different mechanisms, we might not be able to use those mechanisms without causing more damage, or it might not affect those disease processes at all.

    • @LolaKlein
      @LolaKlein Před 3 lety +1

      They could be entirely different mechanisms. Even the disease that causes bones to form is not the same case, sometimes it's the soft tissues that turn into bones, other times is the muscle. So I'm pretty sure whoever are researching the subject have already covered these most obvious possibilities.

  • @lana-b
    @lana-b Před 5 lety +469

    She's soooo so so so cute! And she's honestly just so beautiful! I like her fashion sense and her hair is flawless! She's just so adorable and so pretty!
    I wish her the best! ♥️

    • @jae2827
      @jae2827 Před 5 lety +1

      I know she is!
      Alsooo
      Army!!!!!

    • @lana-b
      @lana-b Před 5 lety

      @@jae2827 Hell yeah! 😀💜

    • @thelorax2908
      @thelorax2908 Před 5 lety +5

      @@jae2827
      God, please stop 🛑

    • @nattharikawanjai8965
      @nattharikawanjai8965 Před 5 lety +1

      Softu 소프트 I found that kpopers are so kind lmaoo

    • @nico-co6hi
      @nico-co6hi Před 5 lety +1

      Jiessie Wee Kind? They mocked a death.

  • @TheJesusAlejandra
    @TheJesusAlejandra Před 5 lety +257

    I would love to see Special Books By Special kids (SBSK) do a video interview of her!

    • @erincostello7792
      @erincostello7792 Před 5 lety +16

      Same, I don't think they've had someone with this condition on have they? Plus she's so lovely I'd love to hear her interview

    • @Maddie-qi7qk
      @Maddie-qi7qk Před 5 lety

      I was just about to say

    • @Yesica1993
      @Yesica1993 Před 5 lety +1

      Great idea! This is the first time ever hearing of this condition. She seems like such a lovely person.

  • @magdalineanyerwe
    @magdalineanyerwe Před 5 lety +405

    I became so sad watching this, a lot of us are so blessed to have every part of our body working yet we unhappy and complain abt unnecessary stuff. Even in her situation nd through pain she's in , she smiles and try to make the best of it. Beautiful girl, beautiful soul.

    • @1hanagima
      @1hanagima Před 4 lety +7

      Majority of children are born healthy. For a child to have a genetic disorder like this is rare so no everyone able bodied aren't lucky and complainers, these sick children are the unlucky ones. (Everyone one else is just average)

  • @moonluna464
    @moonluna464 Před 5 lety +49

    She looks way older than 14, she seems so mature aswell! Keep your head up girl, I know what it is to be in pain 24/7, (I have rare diseases myself that never can be cured but get worse every day) and I know it's hard and sometimes you're in so much pain you just want to end it. Distraction is indeed the key. You're an amazing girl!

  • @arrahmasyafrani9010
    @arrahmasyafrani9010 Před 5 lety +62

    "There is more to you than this disease" is the most encouraging words! Thank you, Natalia, you are my inspiration ❤💞 #keepfighting

  • @danii.4220
    @danii.4220 Před 3 lety +5

    I really like that her mother gives her independence. It is something a parent can take easily away.

  • @iameve8248
    @iameve8248 Před 5 lety +185

    Aw poor girl she is still beautiful and special

  • @laylarose6567
    @laylarose6567 Před 5 lety +65

    She’s so beautiful , may god be with her, she’s so strong !

    • @fordmustang769
      @fordmustang769 Před 5 lety +5

      Layla Rose seems like gods apiece of shit when he does stuff like this so fk him

    • @laylarose6567
      @laylarose6567 Před 5 lety

      Ford Mustang76 it’s not him doing it all the time, you never know what the parents do or take or eat etc , or genetica

    • @laylarose6567
      @laylarose6567 Před 4 lety

      Baphomet the Sabbatic Goat maybe she was meant to be an advocate you never know how it’s supposed to be it that makes sense

    • @tylerbrown3135
      @tylerbrown3135 Před 3 lety

      @Baphomet the Sabbatic Goat For them, it gives purpose and something to look forward to in death. All known religions are unlikely to be true, but ignorance is bliss

  • @specialeffectsmakeupartist9189

    I feel totally disgusted with myself for ever complaining about anything. Your body absorbing your own calcium thus your bones disintegrating? My heart aches for this beautiful, kind and positive young woman. I hope the best for her.

  • @beatbox20fmj
    @beatbox20fmj Před 3 lety +5

    It got me from the start when she said: "I'm in pain every day. Every minute of every day."
    Most adults with less serious problems aren't as positive about life as she is.

  • @mek531
    @mek531 Před 5 lety +444

    Does anyone else think she sounds like Mabel from Gravity Falls?? Sweet girl, I hope more research can go into this disease, and she keeps enjoying life 🙂😊

    • @pinkpink-kb6dl
      @pinkpink-kb6dl Před 5 lety +4

      I was going to comment the same thing!!! She has the same temperament too

    • @oonaverse
      @oonaverse Před 5 lety +3

      Kristen Schaal
      goo.gl/search/Kristen+Schaal&hl=en
      Kristen Schaal, American actress is the actress just letting you know! I like helping out

    • @wesley2508
      @wesley2508 Před 5 lety

      I thought her voice sounded familiar! (I know she's not the actual voice actor)

    • @Pinkkat82
      @Pinkkat82 Před 5 lety

      Jimmy M I love that show

    • @lonesomebabighosts8288
      @lonesomebabighosts8288 Před 5 lety +3

      I was just about to watch gravity falls! 😂, and now I can hear that she sounds like Mabel :))

  • @user-pt1cz4ot1e
    @user-pt1cz4ot1e Před 5 lety +27

    That’s right! There is more to you than the disease. What a beautiful and intelligent young woman. Good for her for living her best life.

  • @Corywww
    @Corywww Před 5 lety +43

    Such an icon and such strength, made me tear up knowing what she has to go through but made me so happy seeing how happy and strong she stays!

  • @ashnkksmom2264
    @ashnkksmom2264 Před 4 lety +5

    Such a remarkable young lady her brother is such a loving brother and he is so proud of her which only makes her even more of a remarkable young lady. I love her attitude and how she faces life.

  • @psyii8055
    @psyii8055 Před 5 lety +204

    Please keep us updated on her! If there is a way to help, I will! Bone Marrow transplant? Part of a kidney, anything I can do to help! She definitely deserves to have a long and amazing life!!!

    • @psyii8055
      @psyii8055 Před 5 lety +9

      Her Art, it's amazing! This coming from someone who's been in the worst art block for near half a decade now :(
      Thank you for the like btw! To whoever you may be!
      There have been two known cases of HIV/AIDS that have been completely cured by bone marrow and something else ( I forget, sorry!) The Berlin Patient and recently in London or Britain. If that's possible, then flat out, this horrible immune issue with her bones vanishing, theres a cure, but is anyone really searching yet?

    • @jasiyaanderson9360
      @jasiyaanderson9360 Před 5 lety +6

      @@psyii8055 I will to I'll do anything I can too

    • @psyii8055
      @psyii8055 Před 5 lety +5

      @@jasiyaanderson9360 I'm happy that people who care about those they don't know, still care! Thank you! I hope we can help her win this battle!

    • @eliicd303
      @eliicd303 Před 5 lety +11

      You are an amazing person, with a very big heart and generous spirit. Bless you always.

    • @onengkusumah2905
      @onengkusumah2905 Před 5 lety +3

      maybe you need a brain transplant... did you even watch the vid?

  • @silviamills5218
    @silviamills5218 Před 5 lety +7

    "there's more to you than this disease" I love that quote

  • @ciahfishing8322
    @ciahfishing8322 Před 5 lety +15

    Im a really tough guy .but this tough young lady had my tears drop..no kidding...all the best for you sweet natalia .may you have a wonderful life along side your love one..

  • @Makenzie.Davis17
    @Makenzie.Davis17 Před 5 lety +54

    All these episodes I see these people who have loads of money and big houses and are able to provide their disabled children with extraordinary accommodations. Could you interview someone who isn’t as fortunate?

    • @janpieterszooncoen2550
      @janpieterszooncoen2550 Před 5 lety +5

      it's pure suffering

    • @moizmoosajee1432
      @moizmoosajee1432 Před 5 lety

      Exactlyy

    • @CrystalNicole13
      @CrystalNicole13 Před 3 lety

      I was thinking the exact same thing!

    • @Sunkissedspirit
      @Sunkissedspirit Před 3 lety +1

      I mean. These children would usually get money to help them? Like benefits? I get what you mean though. It would be a good comparison then again a lot of people with these issues don't want their problems going public. Ik this comment is a year old I'm sorry 🙏

  • @Bhabna10
    @Bhabna10 Před 5 lety +19

    SHE LOOKS EXACTLY LIKE ALITAAAAAA!!!! soooo pretty!

  • @bawlstars7857
    @bawlstars7857 Před 5 lety +25

    I love her voice. She kinda sounds like Mabel from Gravity Falls 🙆‍♀️

    • @Sharkyy2002
      @Sharkyy2002 Před 4 lety +1

      I waited for 90 days already THIS IS THE COMMENT I WAS LOOKING FOR

  • @violentwildling8924
    @violentwildling8924 Před 3 lety +1

    She is so intelligent. I've never heard a more articulate 14 year old before.

  • @MrsCKane
    @MrsCKane Před 3 lety +2

    This woman is the perfect example of the human spirit, she won't give up and she won't let this condition stop her living her life. She's truly extraordinary. ❤️

  • @Bummer1980
    @Bummer1980 Před 5 lety +4

    What an incredible young lady!! Her attitude and strength is so uplifting. I know what it’s like to live in constant pain as an adult, but can’t even begin to imagine how hard it would be to be a child or teen with chronic pain. She is going to go on and do amazing things if she keeps such a great out look on life! Thanks for sharing your story Natalia.

  • @alien_from_andromeda
    @alien_from_andromeda Před 5 lety +7

    She’s so gorgeous!!!! I love her courage and bravery it really inspires me to do more even with my chronic illness

  • @JigzGotcha
    @JigzGotcha Před 5 lety +2

    The fact that she was smiling throughout most of this videos speaks volumes about her strength. I can only hope to be that strong one day

  • @truthseeker5496
    @truthseeker5496 Před 5 lety +2

    Beautiful young lady inside and out.
    I had a parathyroid tumor that was sucking the calcium from my bones. Had it removed and now I’m fine. Wish it was a simple fix for this child. I hope God blesses her greatly

  • @korokitosama8302
    @korokitosama8302 Před 5 lety +11

    She is sooooo inspiring man I wish I was sooo positive like her

  • @Mysteri0usChannel
    @Mysteri0usChannel Před 5 lety +4

    Okay, I'm no biologist and no medical expert, but I'm a physicist, and when I first heard that her body adsorbs the calcium from her bones I immediately had two ideas of what could maybe work to stop her disease:
    1. Hydrofluoric acid. It would have to be applied very carefully but it's a chemical capable of grabbing onto calcium stronger than anything else - fluoridizing her bones could maybe lock in the calcium so the body can't resorb it.
    2. Diffusing other metals into her bones. I work with crystals on a Lithium basis and we diffuse rubidium into there for technical applications. One of the problems we have that many metals tend to diffuse into the crystals, too, so it's kind of hard to create diffusion masks because you need metals for that. Maybe you could diffuse some metal into her bones which are nothing more than glorified calcium carbonate crystals so that even when the calcium is resorbed a skeleton of metal stays behind?

    • @eileen1820
      @eileen1820 Před 5 lety +3

      I'm not a physicist but major props to you for your help and brilliance. 👍👍

    • @eileen1820
      @eileen1820 Před 5 lety +1

      Maybe you were meant to see this. It certainly sounds reasonable what you're saying. Also, as this is so rare, it's likely not funded well for research.

  • @rubychurch3466
    @rubychurch3466 Před rokem +1

    I’m so sorry you have this awful disease. You’re such a beautiful girl in all ways. I’m in awe, totally in awe. You’re more mature than anyone I know. Bless you sweet girl.

  • @emmalinetolley8000
    @emmalinetolley8000 Před 5 lety +1

    this video is so inspirational. there are so many people who take what they have for granted, but always want more. but people like natalia just live in the moment and enjoy life’s presence. my heart goes out to such a wonderful girl. she is a light in this world💛

  • @lowesonia8551
    @lowesonia8551 Před 5 lety +7

    Courage. Beautiful smiling face . Dear Natalia I am full of admiration for you. Precious girl you have more to give. Than most would be young stars in shows. Your Family are wonderful

  • @UnsealedWings
    @UnsealedWings Před 3 lety +4

    She's adorable. I seriously hate that this is happening to her. Breaks my heart.

  • @ItsMarionique
    @ItsMarionique Před 5 lety +3

    It's amazing how the human body works. She's such a strong young lady! I pray for her a long life full of happy memories and comforting love. ❤️

  • @just_artzyy1795
    @just_artzyy1795 Před 3 lety +1

    Natalia I have no clue if you'll see this but we went to elementary school together. I always thought you were such an amazing kind and bright person and an even better friend. We never really talked much because I had to move away but I've seen how successful you've been with your art and you inspire me to keep drawing no matter what. You are amazing and you always have been, stay strong girl. Hope we can meet up soon. - Amy

  • @romanmekonnen3400
    @romanmekonnen3400 Před 5 lety +5

    Brave girl with Good heart. I love your family too.

  • @cyb0rgirl
    @cyb0rgirl Před 5 lety +17

    A real wake up to how lucky I am 🙏🏻 her strength is amazing

  • @everydayemir1265
    @everydayemir1265 Před 3 lety +2

    She’s so beautiful I wish her all the success in her life....

  • @crazyeye7842
    @crazyeye7842 Před 5 lety +1

    Just want to say I too have a disease that affects my bones which causes great pain everyday sometimes it's hard to even stand or walk at times and thought how much it sucks but after watching this I realized I'm lucky and need to be as strong as her...i wish you the very best in life

  • @claudia-ph5rq
    @claudia-ph5rq Před 5 lety +25

    Bless her ♥️

  • @livswiftwaterajsso
    @livswiftwaterajsso Před 5 lety +9

    I’m very jealous of her brother 😅. I wish I had a brother like that. I have illnesses too but my brother doesn’t help me or give me any encouragement or anything :/. She’s a strong girl! You go Natalia!

  • @sunstripe85
    @sunstripe85 Před 5 lety +2

    She is SO sweet, adorable, kind, strong, and talented! I love her so much. The condition she has sounds absolutely awful to have to deal with every second of every day. I'm so sorry she has to live constantly with that and hope someday treatment can be created. In the meantime, she handles herself with grace. She's truly an inspiration to all--and her family seems absolutely lovely as well :)

  • @johnellis4330
    @johnellis4330 Před 3 lety +1

    So true! I keep thinking how cute and sweet she is. Her adorable personality stands out more than anything else. You just have to love her. I wish her all the very best... 🌸

  • @geebeez9748
    @geebeez9748 Před 5 lety +5

    “There’s more to you than this disease”
    YES I AM CRYING DONT TOUCH ME IM SOFT

    • @punkyagogo
      @punkyagogo Před 3 lety

      I read that just as she said it lol

  • @JusticeAnimeGeek
    @JusticeAnimeGeek Před 5 lety +3

    It's truely sad that there's not really much for pain relief. I no where near compair with my issues, but I do understand having to just bare with it. I wish her the best

  • @Samanthamoemoes
    @Samanthamoemoes Před 4 lety +1

    What a beautiful girl and a pure soul. Prayers for her and her family!

  • @alejandrafernandez7891
    @alejandrafernandez7891 Před 5 lety +2

    This girl is so sweet! I hope she gets some relief, living with chronic pain is terrible.

  • @FranciscoGonzalez-bi5ce
    @FranciscoGonzalez-bi5ce Před 5 lety +5

    I have known her, her whole life and still learned something new from this video. I am very proud of Natalia. Follow her on instagram @natalia.creates to see her latest art.

  • @darkestwidow1587
    @darkestwidow1587 Před 5 lety +6

    Natalia, you're amazing! And so strong, and inspiring. Lots of love

  • @TheAvprobeauty
    @TheAvprobeauty Před 5 lety +1

    When I see people like her making the best of her situation, it reminds me of what we all have to be grateful for.

  • @samanthasimental3788
    @samanthasimental3788 Před 5 lety +1

    My hat is off to this young lady. What strength.

  • @dolcevida2239
    @dolcevida2239 Před 5 lety +85

    Awww she said her head feels like a bowling ball ready to fall.. 🤭😔 that’s just sad.. I hope she’s on some strong pain pills. Drug users abuse these drugs and people like her need them on a daily basis.. I truly hope there’s an answer for all this so that she can get better soon

    • @Starae336
      @Starae336 Před 5 lety +14

      Drug addiction Is a disease like any other..

    • @emilyhughes4297
      @emilyhughes4297 Před 5 lety +6

      A lot of people with addiction to pain medications were prescribed them by doctors originally, they are very addictive and once the pain they were prescribed them for goes away the addiction still stays. It's not really there fault, but doctors over prescribing and not giving the right support and advice

    • @mrluna7476
      @mrluna7476 Před 5 lety +2

      medical marijuana can probably help her

    • @Yesica1993
      @Yesica1993 Před 5 lety

      @@Starae336
      Stop repeating this falsehood.

    • @mandarinablue8438
      @mandarinablue8438 Před 3 lety +3

      Can we not bring anyone down just so you feel entitled and shit? People who abuse themselves have gone through shit as well and usually from others. Same as those who cut same as those who smoke yes it's a negative way to cope but these most of the times don't ask for help and don't know how to deal there are those who are alone. Don't judge anyone like this just because this girl doesn't do anything to be in such pain. Drug addicts are people too. They have stories too. Yikes.

  • @ChristineInNornia
    @ChristineInNornia Před 5 lety +9

    Life can be so damn unfair sometimes💔😓
    Natalia is living her life, best she can, despite her condition, remarkable 👏🏽

    • @ahdkfknsbcienfnsk
      @ahdkfknsbcienfnsk Před 5 lety

      Christine in Nornia I take it you don’t understand Emojis. But you literally just called her clapped 🤦🏽‍♂️

    • @ahdkfknsbcienfnsk
      @ahdkfknsbcienfnsk Před 5 lety

      J T Akinola Yes she did. That’s what 👏🏽 means.

    • @nonyabidness5708
      @nonyabidness5708 Před 5 lety +1

      So the clapping hands aren't applause?! 😱 Dear lord... What does "clapped" mean? I've been using that emoji....

  • @jasperalford
    @jasperalford Před 3 lety

    I wish her all the best, seeing these incredible people living with such difficulties really does open your eyes to how lucky we really are and how much we take for granted.

  • @bennett029
    @bennett029 Před 5 lety

    She is so sweet. I cannot imagine being in her shoes but she is one of the bravest girl. You go girl!!!! I love you

  • @invaderhorizongreen8168
    @invaderhorizongreen8168 Před 3 lety +4

    With all the genetic abnormalities it is a wonder how many of us are even born whole and fully functioning.

    • @radicalcartoons2766
      @radicalcartoons2766 Před 10 měsíci

      It's only in the modern world that anyone with a condition like this even survives. They would have been abandoned as children or locked away, back in the day.

  • @meganishere
    @meganishere Před 5 lety +3

    😔 I hope she doesn't die from the bones disappearing she so beautiful CHRIS needs to see this!!!!

  • @joshrodriguez2711
    @joshrodriguez2711 Před 3 lety

    Daww she is just so precious too see her willingness too get out there and live , there are countless children with no diseases who don't have the fire and passion she does for life

  • @xoCyberxo
    @xoCyberxo Před 5 lety

    She's gorgeous. I love her outlook on her condition and how she smiles. She's really inspirational

  • @strongdan1
    @strongdan1 Před 5 lety +5

    Amen girl keep living

  • @GeometryDashKenaz
    @GeometryDashKenaz Před 5 lety +109

    Man so what if her skull bones start to get absorbed? 😐

    • @psyii8055
      @psyii8055 Před 5 lety +59

      Sadly, there wouldn't be much to do then. I'm guessing she's on Vitamins for her bones already, which actually does help a normal person depending on each individual, but I'd guess it may not help her much 😢

    • @grayskindablue
      @grayskindablue Před 5 lety +42

      They could probably reinforce that with layers of mesh/titanium.
      I think the biggest concern would be her spine’s vertebrae getting absorbed. That’s paralysis, literally nothing to hold her up without ever leaving braces and bedrest, and then with just a spinal cord left that’d kill her.

    • @grayskindablue
      @grayskindablue Před 5 lety +29

      Calmo Omlac I mean the femur is the strongest bone in the body and it’s clearly already affected those, I don’t see why it wouldn’t attack the skull. What a fuckin terrifying disease tbh. I’m guessing it could spread to her jaw and teeth as well? Damn.

  • @teresarayburn4501
    @teresarayburn4501 Před 5 lety

    she is more braver than she even knows. i wish the very best for her and her family. much support from west virginia

  • @mikaelkhan5879
    @mikaelkhan5879 Před 5 lety

    Her personality and smile is what really brought me to tears ;( she's soo beautiful and deserves soo much better than this sighs

  • @saraharmstrong8150
    @saraharmstrong8150 Před 5 lety +18

    Amazing young lady🤩...Have you seen the Baxter Boys on CZcams?? The lil dude on there has infusions that help bone growth and movement! Good luck x

    • @kristaj428
      @kristaj428 Před 5 lety

      He has a different illness he has osteogenesis imperfecta or brittle bones he has all his bones they just break constantly which cause malformations which causes shortened limbs. She is losing her bones.

  • @rashone2879
    @rashone2879 Před 5 lety +3

    Her artwork is lovely. I can see a career there.

  • @toomuchcoke233
    @toomuchcoke233 Před 4 lety +1

    This had me in tears, such a beautiful human being 😢

  • @j3s0n
    @j3s0n Před 4 lety

    Poor little sweetheart. Keep on smiling, you're a real inspiration

  • @LpsFlare
    @LpsFlare Před 5 lety +3

    this girl is amazing- i hope the best for her!
    Also, maybe this is wrong but have scientists looked in to replace the bones that are fading away with prosthetic bones?

  • @bmar1900
    @bmar1900 Před 5 lety +5

    Her personality is so sweet will be praying for her and her family

  • @anthonyt1924
    @anthonyt1924 Před 5 lety +1

    I love the way she’s always positive she’s such a great person

  • @5663828489
    @5663828489 Před 5 lety +1

    I live with chronic pain everday. Like you I am at the point that I can only manage my pain. You are so sweet and an encouragement to me. Thank you for being so open and strong with what your life is. I'm an artist and a crafter and like you misdirect my attention away from my pain. You are a beautiful young lady and I pray for more days with less pain than days with too much. Take care, sweet heart!!

  • @MOOMOO2728
    @MOOMOO2728 Před 5 lety +11

    SbSk.... I’d love to see Natalia get interviewed.

  • @Lynn-rv4ty
    @Lynn-rv4ty Před 5 lety +4

    my mind tries to solve every problem (despite being mostly unqualified) and i thought that in the future that people like her could very well be some of the first cyborgs which is cool as hell but that's probably not the most uplifting thing i'd assume

  • @annabarham155
    @annabarham155 Před 5 lety +1

    I nearly didn’t make it through to the end because it seemed so tragic. I’m really pleased though that this beautiful girl is still living her life to the full and not letting herself or other people around her limit what she can do for herself. You can have physical illnesses or disabilities like Natalia’s that are labelled “life limiting”, but it’s also your mental health and your emotional state that really overrules everything. You go and show them Natalia!

  • @giraffefreaky7080
    @giraffefreaky7080 Před 3 lety

    She's just so happy. Seeing how happy she is and strong it's just so hear warming.

  • @hughjass6933
    @hughjass6933 Před 5 lety +8

    Is there a website where I can help?

  • @Michelle_Schu-blacka
    @Michelle_Schu-blacka Před 5 lety +102

    That's a weird one.
    When you think of all the things that can go wrong with the human body, something that causes your bones to disappear is one I didn't think of.
    Surely there must be some way to 'augment' her bones with metals? How would you even do that? How would you attach tendons?
    Now I'm wondering if someone has an illness that causes other parts of the body to shrink.

    • @pinkmonkeybird2644
      @pinkmonkeybird2644 Před 5 lety +37

      Yoruichi The Extra Terrestrial It sounds logical at first, but since her bones are being reabsorbed into her body, there’d be nothing left to attach the metal augments to over time and they’d float loose and could cause a lot of damage. She’d be better off with an exoskeleton that would give her more functionality, but that would be too heavy and cause more fatigue and pain. I had never heard of her disease before; she definitely wasn’t a winner in the genetic lottery, but she sure got a great family and a good brain. Hopefully, someone will figure out a way to reduce the symptoms, but she’s had a pretty great life so far.

    • @Ehlaar
      @Ehlaar Před 5 lety +7

      They'd have to provide a whole skeleton multiple surgeries long hours lots of blood loss risk of infection

    • @Michelle_Schu-blacka
      @Michelle_Schu-blacka Před 5 lety +2

      @@pinkmonkeybird2644 What if you were to effectively encase what's currently left of her bones?
      Could you theoretically replace some of the bones?

    • @pinkmonkeybird2644
      @pinkmonkeybird2644 Před 5 lety +7

      Yoruichi The Extra Terrestrial I don’t know, but wouldn’t whatever bone you added also be absorbed by her body eventually? Also, bone grafts like that tend to fuse solid, so she’d have no joint flexibility. It’s a pretty vicious disease, that’s for sure. I’m hopeful her doctors can find ways to ease her symptoms. It was sad at the end when she told the doctor her neck was starting to fail and her head felt too heavy to hold up.

    • @andreahl3494
      @andreahl3494 Před 5 lety

      Soo... let's say she donates her blood. Is it possible for the reciever to get this or is it totally just based on one's genes?

  • @simplyrise5217
    @simplyrise5217 Před 5 lety

    She got a beautiful smile. The parents are truly amazing. God bless y'all

  • @rosemarymukundi1345
    @rosemarymukundi1345 Před 5 lety

    The fact that she still puts on her smile despite of this difficult condition is astounding, not short of remarkable even while enduring her constant pain. I wish I could have the same spirit of courage and joy like her.

  • @129marcela
    @129marcela Před 5 lety +9

    She's a lovely young lady and I'm lucky to have her in my life ❤️❤️❤️

  • @balsamicvin9935
    @balsamicvin9935 Před 3 lety +3

    My mom would be like, "you did not drink enough milk"

  • @kazbah5672
    @kazbah5672 Před 5 lety

    Sweet girl. Love seeing her enjoying herself with friends. A great distraction from her pain with normal teenager stuff. Truly inspirational

  • @tumosa0
    @tumosa0 Před 4 lety

    I want to thank her so much. She helps me get through all the tough stuff in my life. Thank you.

  • @spinachhouse
    @spinachhouse Před 5 lety +3

    "There's more to you than this (condition)"

  • @ririarevenna2853
    @ririarevenna2853 Před 5 lety +6

    Moral of this disease, the one that turns you to "stone", and the one with super fragile bones:
    Bones are very important, you gotta have the correct amount with the correct stability/strength.
    Also, these people are heros for being able to adapt and accept these difficulties. Truly the best of humanity is displayed on the lowest and most disadvantaged for they are the ones who are the most selfless when logic dictates that they should be selfish.

  • @cartoonking1063
    @cartoonking1063 Před 5 lety

    Incredible girl, positive and smiling and not letting it beat her. Truly amazing. Her family must be proud 🏋️‍♀️

  • @yellowflower2067
    @yellowflower2067 Před 5 lety +2

    This girl gives me courage to face my problems. She is an inspiration to so many. I am thankful that she has a positive outlook on life while so many others would become burdened. My heart goes out to her and I want to be more positive about my world. 😄