The Teenager with Vanishing Bones | Living Differently
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- เผยแพร่เมื่อ 21 เม.ย. 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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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
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.
@@jenniferwooten6554 Your comment is bloody amazing! 😊 I had to say it!
@@madaraaradam7799 nice! Thank you!!! ❤🤘😊
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.
@@jenniferwooten6554 It's the struggle that makes the difference in their out look.
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
I came to comment something about her smile, too. Her demeanor is so kind and strong.
Haley T omg same! Was looking for comments on how beautiful she is!!
ugh same!!! she is so beautiful
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.
DapperJazz try being her and let see if u will still say life is unfair
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.
yes! i am tired of those comments
YES! THIS!!
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.
This is really friendly of you!❤️☺️
this 👏💖
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.
LaHappyDapp ikr on everyone of these videos there’s someone who claims to know them
Press (X) to doubt:
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That's really nice.
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?
no one knows if this is a truth or a lie except for the oc.
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
Naughty Finger sorry, but I love ur name and prfp
@@heyguys6741 a good pun, for sure.
Naughty Finger she gets a lot of therapy. I’m sure those psychologist do come at a cost for her though.
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"
@@jakotheclown4471 Obviously
The Wonder Woman mug is fitting
Nope,Shes short
@@endroholic7161 what's up with all the trolls I keep seeing now a days 🙄🙄
@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
@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
@Tobby ._. yeah I get that. I've been working on managing my TH-cam comment anger and panic responses too lol🤷😅
OMG Her teacher looks so young, I thought he was another student!
I'm glad I'm not the only one! My jaw dropped when it said teacher
Me too!
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 😲
Asians man, asians
Same dude
“There’s more to you than this disease.”
OMG girl ur freaking amazing.
Her art is so good I wish she wasn’t in so much pain
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
I can barely draw well a little
Wow her strength and determination is so inspiring!
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.
I can’t. She has such a beautiful personality.
I love it! ❤️
I agree ❤❤
@Brian Velez You can't... What?
most people like this are beautiful souls because they don't take things for granted like most of us do.
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.
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!
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.
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)
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
Jayda Ashlyn I think you’re on to something....🤔
Omg you can make a fortune with this idea
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.
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.
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! ♥️
I know she is!
Alsooo
Army!!!!!
@@jae2827 Hell yeah! 😀💜
@@jae2827
God, please stop 🛑
Softu 소프트 I found that kpopers are so kind lmaoo
Jiessie Wee Kind? They mocked a death.
I would love to see Special Books By Special kids (SBSK) do a video interview of her!
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
I was just about to say
Great idea! This is the first time ever hearing of this condition. She seems like such a lovely person.
"There is more to you than this disease" is the most encouraging words! Thank you, Natalia, you are my inspiration ❤💞 #keepfighting
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!
I really like that her mother gives her independence. It is something a parent can take easily away.
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 🙂😊
I was going to comment the same thing!!! She has the same temperament too
Kristen Schaal
goo.gl/search/Kristen+Schaal&hl=en
Kristen Schaal, American actress is the actress just letting you know! I like helping out
I thought her voice sounded familiar! (I know she's not the actual voice actor)
Jimmy M I love that show
I was just about to watch gravity falls! 😂, and now I can hear that she sounds like Mabel :))
Aw poor girl she is still beautiful and special
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.
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.
She’s so beautiful , may god be with her, she’s so strong !
Layla Rose seems like gods apiece of shit when he does stuff like this so fk him
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
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
@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
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!!!
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?
@@psyii8055 I will to I'll do anything I can too
@@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!
You are an amazing person, with a very big heart and generous spirit. Bless you always.
maybe you need a brain transplant... did you even watch the vid?
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!
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.
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?
it's pure suffering
Exactlyy
I was thinking the exact same thing!
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 🙏
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..
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.
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💛
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.
"there's more to you than this disease" I love that quote
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.
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. ❤️
She’s so gorgeous!!!! I love her courage and bravery it really inspires me to do more even with my chronic illness
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
When I see people like her making the best of her situation, it reminds me of what we all have to be grateful for.
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 :)
SHE LOOKS EXACTLY LIKE ALITAAAAAA!!!! soooo pretty!
Brave girl with Good heart. I love your family too.
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
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
She is sooooo inspiring man I wish I was sooo positive like her
I love her voice. She kinda sounds like Mabel from Gravity Falls 🙆♀️
I waited for 90 days already THIS IS THE COMMENT I WAS LOOKING FOR
she is more braver than she even knows. i wish the very best for her and her family. much support from west virginia
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. ❤️
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?
I'm not a physicist but major props to you for your help and brilliance. 👍👍
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.
Bless her ♥️
What a beautiful girl and a pure soul. Prayers for her and her family!
This girl is so sweet! I hope she gets some relief, living with chronic pain is terrible.
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
Natalia, you're amazing! And so strong, and inspiring. Lots of love
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.
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.
She's adorable. I seriously hate that this is happening to her. Breaks my heart.
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
Drug addiction Is a disease like any other..
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
medical marijuana can probably help her
@@Starae336
Stop repeating this falsehood.
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.
Sweet girl. Love seeing her enjoying herself with friends. A great distraction from her pain with normal teenager stuff. Truly inspirational
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
A real wake up to how lucky I am 🙏🏻 her strength is amazing
Man so what if her skull bones start to get absorbed? 😐
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 😢
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.
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.
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
She is so intelligent. I've never heard a more articulate 14 year old before.
“There’s more to you than this disease”
YES I AM CRYING DONT TOUCH ME IM SOFT
I read that just as she said it lol
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!
She's gorgeous. I love her outlook on her condition and how she smiles. She's really inspirational
She’s so sweet and beautiful, it’s always the kindest people who suffer.
Life can be so damn unfair sometimes💔😓
Natalia is living her life, best she can, despite her condition, remarkable 👏🏽
Christine in Nornia I take it you don’t understand Emojis. But you literally just called her clapped 🤦🏽♂️
J T Akinola Yes she did. That’s what 👏🏽 means.
So the clapping hands aren't applause?! 😱 Dear lord... What does "clapped" mean? I've been using that emoji....
Amen girl keep living
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!!
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... 🌸
Her artwork is lovely. I can see a career there.
Amazing young lady🤩...Have you seen the Baxter Boys on TH-cam?? The lil dude on there has infusions that help bone growth and movement! Good luck x
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.
Her personality and smile is what really brought me to tears ;( she's soo beautiful and deserves soo much better than this sighs
Poor little sweetheart. Keep on smiling, you're a real inspiration
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.
😔 I hope she doesn't die from the bones disappearing she so beautiful CHRIS needs to see this!!!!
This girl smiles so much for whats shes dealing with. Amazing. I feel so sorry for this kid. I couldnt imagine having this kinda strength. I woulda taken my chair off a bridge into a river.
This had me in tears, such a beautiful human being 😢
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?
Her personality is so sweet will be praying for her and her family
I love the way she’s always positive she’s such a great person
I want to thank her so much. She helps me get through all the tough stuff in my life. Thank you.
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
She's a lovely young lady and I'm lucky to have her in my life ❤️❤️❤️
The amount of pain that she goes through everyday is unimaginable but it’s amazing that she has a positive bright attitude towards life and thank god she has the support and help she needs from specialist doctors
Incredible girl, positive and smiling and not letting it beat her. Truly amazing. Her family must be proud 🏋️♀️
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.
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.
They'd have to provide a whole skeleton multiple surgeries long hours lots of blood loss risk of infection
@@pinkmonkeybird2644 What if you were to effectively encase what's currently left of her bones?
Could you theoretically replace some of the bones?
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.
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?
My mom would be like, "you did not drink enough milk"
My hat is off to this young lady. What strength.
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!
Is there a website where I can help?
"There's more to you than this (condition)"
She's such a sunshine. I feel warm watching how happy she is. I just hope they'll find a medicine that can help her pain. 💛
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. 😄
With all the genetic abnormalities it is a wonder how many of us are even born whole and fully functioning.
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.
I'm glad that the students are not bullying her.
Man, the human body can sometimes be terrifying with these mutations, i hope she keeps living a happy life.
It’s amazing how happy she is despite being in pain! She’s one of the strongest people I’ve ever seen.
She’s so beautiful I wish her all the success in her life....