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- เผยแพร่เมื่อ 28 ก.ย. 2024
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A housebound woman feels like she is burning alive from the inside because of a rare genetic condition. Samara Rose Ingraffia suffers from erythromelalgia or Man on Fire syndrome, which leaves her feeling like she is experiencing constant second degree burns. Amazingly Samara, who lives in Michigan, also suffers from Renauld’s syndrome - an equally rare condition that means her body reacts terribly to even the slightest drop in temperature. To have anything like a normal life Samara can only be exposed to a temperature of 17 degrees Celsius - anything higher or lower will lead to incredible suffering. Her father Brian is a former college professor who is also housebound with the same two conditions.
Videographer / Director: Dustin Bacon
Producer: Dan Howlett, Nick Johnson
Editor: Sonia Estal
If you wish to help Samara Rose, visit her Facebook page for more information on how to donate:
/ hopeforburningrose
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I’m so disgusted with our healthcare system. This poor woman has to live her life in pain because the one possibility of a cure or at the least some comfort is $60k. Unreal
Marilyn Edwards :( Me Too I Agree
Well, you dont know what happens in Russian hospitals. Youre Lucky to have such a good conditions
Торгаш I don’t think you know anything about me or my condition?
@@marilynedwards9938 i Just compare two sistems. And i know what im talking about. Of course if you live in India, or Africa its a sin to complain. Health care sistem is not so good. But i saw european and American hospitals. The conditions there are really great
I have the same condition.
she seems really sweet i wanna give her a hug:'(
and her father :(
Me too
Me too 💙
My name is Samara I thought I was the only one!
Thank yous. I love hugs. Hugs are helpful.
What’s the point of having a cure if it can’t be afforded
Facts
Best comment 👆🏻👆🏻👆🏻⭐️⭐️⭐️⭐️⭐️
As medical technology improves over the years, cutting edge treatments will become more accessible and affordable. It will take years, but it will trickle down.
@@rose1742 is that supposed to be reassuring? awesome, just a few more years of agony for these people
@Didi you spitin straight fax 😭
Can we just stop and give credit to the mom? I mean, she works so hard to support her family and does her best to take care of both her husband and her daughter whenever she comes home to them. That's pure gold! ❤
Wambui Wachira I’m sure the husband and daughter are on some type of social security disability program. But yes, lots of love a courage from the mother! What a good woman
@@faceshredder2576 Even if they are it wouldn't make much difference. Disability doesn't cover much and those who rely on it alone live in poverty.
A someone who has health issues that make me mainly stuck in my house and in need of help in several ways, I wish I could hug that mom. She's amazing.
Lindsay Osterhoff it may not make a difference to you but to the family it makes a world of a difference. The mum works and supports the family but the government supports them also. If you think the mum could solely support this family alone while paying for medical support you’re crazy. Lol there’s government programs out there for people like this girl and her father because their medical condition would cost them a fortune alone even if the mother has insurance through her own work.
@@faceshredder2576 As a disabled person I am quite aware of the amount of money given to people who receive benefits. It is not much at all. The fact that you seem to think that it is shows you've never done much research into it. There are government programs. That part is true. However, those who depend on it live in poverty.
I suffered 3rd degree burns to 35-40% of my body at 22. An I'm disabled to due a brain malformation that causes massive chronic headaches and migraines and on top of all the I have very weak immune system. In fact I've been sick with the same cold for over 8 weeks now. But with those burns I can only imagine how she feels all the time. It was agonizing and unbearable at times. I was losing my mind. I feel so bad for her. She will be in my prayers for life.
Like wheelchair disabled or mentally disabled? Anyway I salut you dude/ (i don't know what a girl dude is called)
+Rouge TrooperZ8 dudette ;')
Chiari Malformation?
It doesn't matter you look so pretty
It does matter. The pain matters. It's not about looking pretty.
That would be so painful and hard to constantly live with that.. My best wishes to her.
it would be..i wish i could give her that 60k dollars. i wouldn't spend it on anything else. 💔
Army everywhere!!
i wish i could donate 100k to her..
She’s so cheerful and positive even though she’s in such a condition, it hurts to see her like this 😭 I wish I could help her
Her hands constantly shake it you look close when she holds them up. Poor sweetie. I hope we can help her.
It's from the pain and the nerve damage 😔😭
She seems like such a nice person she doesn't deserve this
Rice Head i agree
Thanks to the father.
Rice Head yeah :(
Nobody deserve that
She seems like a really nice girl. She is so beautiful and it sucks for her to have that. I hope she gets better and they find a cure soon.❤️
Her hats are adorable
An Cermet sexist...
@@naydd9459 why?
@@ihavenonamehi813 Don't assume anyone's sex.
She could sell them!
An Cermet. Her clothes are very cute too! She's seems very creative.
She lives in Michigan. That's even worse , I live here and the weather is scolding in the summer and freezing in the winter. This girl and her father is tough ✊
yes both are the worst but especially winter and having to have heat on at all and more isolation (even before the pandemic)... the house finally sold and i just took a horrific journey to much better weather in northern California...sadly at the worst time everrrrrrrrrrrrrrrrrr with the pandemic and I'm doing worse than ever already... gotta find a forever home...
Omggggggg shes soooo beautiful❤️❤️ simple, delicate and innocent. I wish people could help their family.
Ikr she is so beautiful i wish her good health and i hope they make a cure.
Beutiful World me too!
Beutiful World then you sir are a trap
yeah she's HOT ;)
Whiterun Guard omfggggg
I wish i could donate.
Same
Same . Nice profile pic by the way
Lily Frie Marina 😍
+ameliaaa lol I know right she's my queen
Lily Frie yess
such a beautiful girl, hope she gets help soon.
thank you
she ded
She is so pretty and I love her style
Dvaixh Xbaixba I was thinking the same! Love her style
Weirdo Lilac Girl coming at you hi
Same
Raynauds syndrome is the WORST. It is so scary going outside in the winter time. I got frostbite in 20 minutes on my toe when I was younger. I had to get it cut off.
I live in Mass. so the drastic change in temperature and weather doesn’t help at all.
I can’t even imagine having both these things, I feel so bad.
Wait what how old were you
high quality content I was 12 years old when I got frostbite. I’ve been in close encounters plenty of times after that, like last winter, but I know my precautions now. I can’t even clean snow off my car in one go. I have to take breaks
I do work as a pharmacist and yeah raynauds is a very dangerous thing. Slight drop in temp and you'll begin to have frostbite which hurts
I live in mass too squad (and have raynauds)
I have both of the diseases and let me tell you it’s not easy to deal with
The mom is a superstar. Works to support them and then comes home and helps them as much as she can
How can u smile when ur burning ? Like she so amazing, her beauty, im crying bc she's going through this and she's smiles ! ❤️
Nishika Amin she is such a beautiful kiddo!! My heart goes out to her as well!!
Crying srsly?
Demonologist some people are sensitive 😉
Lєαh Thє Chєєtαh they are pathetic, in older days there where no such things
Demonologist okay then i guess.
Omg this is so sad. She’s so beautiful. Her hair is gorgeous and her hats are adorable❤️❤️❤️
thank you 💜
We need more people like you💜💜💜she's so inspiring :)
LETS START A GO FUND ME FOR HER AND OTHER PEOPLE THAR HAVE THIS AWEFUL CONDITION.
btw she is so gorgeous and I love her outfits. I hate that she is miserable.
I would love to help do this x I dont know how to set up a go fund me page :/ or how it works I'm not good with things like that, do you know how to do it morgan? X
She did but it flipped
Flopped not flipped
I have Reynauds syndrome and my hands are like ice but my face is always on fire.
You probably have both EM and Raynaud's? :( I suggest joining support groups for the conditions on fb; I'm in them.
Yeah...same...Raynaud's sucks. Trying to get help now. Raynauds and fibro are the only diagnosis' I can get. Been searching for answers for other problems with joint pain and random bee sting pain all over and feeling faint and temperature sensitive. Is that part of it?
Rosie Posie wait r u samara
Have a great day! Getting help for chronic pain is very difficult! I'm sorry you're suffering, fellow cp warrior! Joint pain/arthritis could be from the fibro. Bee stings, temperature sensitivities...yes, that can definitely be part of EM & Raynaud's diseasel...beev stings could be fibro too..they basically all work together to make everything go as haywire as possible heh
Am I Famous Now yes I'm Samara Rose
Her smile is so pretty!! Also, I have Raynaud's syndrome and I didn't know that it could be that serious, I guess I'm just used to it but dang
Same
+yippehanako Thank you. I'm sorry you deal with that. I found out recently that Raynaud's can effect the entire body! I guess I shouldn't be surprised because my EM effects most of my body, but my Raynaud's mostly just effects my hands and feet.
What's it like for you? I couldn't imagine that I feel so bad for her, not to mention it sounds like a rather obscure illness so funding and research is probably lacking
+Bring me Peter pan It's definitely very lacking but we're hoping awareness will help!
+Rosie Posie i feel so sorry for you
and I complain about my acne, thank God iam so thankful!!🙏
Acne is no fun either, physically nor emotionally. Perspective is important, but just because someone may have it worse doesn't mean your pain isn't real and valid.
Haha, your right but acne will go away on its own, and the condition the girl has is way different because she has it all over her skin and she gets burn, so be more open minded before you tell your opinion!
Muhammad osman I'm the girl in the video. I know. Of course acne is much more common, but it can be a chronic problem that never goes away and can be both physically and emotionally painful.
How is saying your pain is still valid close minded anyway?
What!!Your the girl in the video!!I did not know that, I am so sorry, I will agree with u since your that girl in the video!!
Praying for them.
Donate, praying won't help her in this present moment
+Ross_AFC U SUCK PRAYING HELPS rely on god
Money finds cures, not prayers lmao.
+Shammgod Santiago She can believe in prayer if she want to. Why not come up with your own comment instead attacking somebody for theirs.
+Misan Sathanas 'instead of doing something' - please do tell me what I'm supposed to do then? I don't know how to help them, but at least I contributed a positive thought. I would be willing to bet that you have likely not 'done something' either, and you have contributed nothing but negativity. If you have nothing nice or constructive to say, please don't say anything.
I am so blessed for Australia’s health care system. Prayers sent to that amazing family 💗
please I need to talk to that girl I have suffered from that condition and I learned ways to control it, please let me help her
+TheRitaish please let me help her
+TheRitaish PLEASE LIKE THIS SO SHE CAN SEE ME
I would love to help, but I don't even know if her name is available to look up and maybe find an email. Just on a curious note, how do you deal with the condition?
I saw her commenting on other comment on this video her name is RosiePosie.
+Jaime Baird I mean Rosie Posie she commented on the comment below yours
She looks so sad all the time it's horrible
She should do TH-cam videos like makeup and fun videos to help other people
+jasmine vaughan My mum wants me to be a "youtube star," ha. I am really interested in making short films/fashion films, but it's hard with all the white noise from my fans and all... And I am terrible at talking :P
+Rosie Posie an external mic may help
+Rosie Posie You should! You would be an inspiration and I would love to watch your channel! I would subscribe :) Let us know!
+OhKReally we should all be youtube buddys and help each other what do you think lets support each other
Yus!
My heart hurts for her. As a Michiganer i can't imagine the hell she goes through with our constant weather change.
Thank you. Yeah, the weather and transitions are the worst almost all the time!
Rosie Posie pppp
Shachelle Preston same for me here in illinois!
IKR I live in Michigan too 😂 I hate how we had no snow on Christmas and now snow is here 🤦♀️ almost summer tho 😁
She recently sold her house in Michigan and is preparing to move to California!!
People suffer in so many ways.
WHO is on your profilepic?
Just like everyone who sees your profile picture.
You're definitely right ❤
I unfortunately also suffer from erythromelalgia and raynauds, took me 4 years to get diagnosed and even then it's because I did my own research, tried more medications than you can believe and nothing touches it, yet my doctor still refuses to prescribe a wheelchair cause I'm only 18 and 'too young to be in a wheelchair' for those wondering it's extremely rare, rarer than being struck by lightning and it's not proven to be genetic. Some people have kids who never show symptoms their entire life, others who have never had it will have a kid who does have it like me. Like her I've missed out so much on life... started showing symptoms at 14 and it's gotten to the point I don't leave the house, never been to prom, can't go trick or treating, can't even stand long enough to make my own food half the time.
So sorry, fellow EM & Raynaud's warrior! That is so common with us -- we have to do our own research, educate, and push to get any treatment or diagnosis because no one wants to touch our cases cause it's too much of a mystery. Is there any way you could change doctors? You should absolutely be able to get doctor's note and recommendation and whatever else for a wheelchair and accessible parking placard! Your chronic pain is VALID; your disability is VALID! Doctors who are dismissive of pain/conditions because of someone's age are stubborn ASSHOLES...completely ridiculously ignorant! People who need wheelchairs PART TIME or all the time for PAIN, to prevent more pain, and all kinds of reasons are common and absolutely valid! Young people have chronic pain and chronic illness and all kinds of disabilities ALL THE TIME; it's a fact.
It is genetic sometimes; it comes in many forms and for many reasons. Mine in primary and inherited, but my dad didn't have symptoms until after I did in his 50's (while mine was triggered young as a child and got progressively worse.) Plus the fact that is comes in so many severities and being so rare, that many people can have or carry conditions like this without ever even knowing or thinking it's normal because to their life experience it is their normal, and that's all they've ever known. Someone could have it so mildy they don't even realize, then have a child who gets it severely. And not everyone has knowledge of their family genetic/health histories.
So sorry for all your pain!
How did you get diagnosed? What specialist? I have this too, I react to the sun and hot water mostly. Nobody seems to believe that I'm "having allergic reactions to heat". They're looking into lupus and mastocytosis. There's no way they'll think to look for this on their own. (I have a couple rare diseases already so not surprised the answer might be a rare disease)
L C hi I’m allergic to water too can’t even take a shower any more! When my skin turns hot I get burns all over my body
I have erthro and exfoiltive chelitis it sucks
Have you had any luck finding a doctor to prescribe a wheelchair since then?
Why doesn't someone make her a gofundme account?
There is one I think
She had one
She had one but it wasn’t successful and didn’t raise a lot of money.
Ppl really NEED to stop staring and being rude to Samara !!! shes beautiful and sweet- and i was raised that you dont stare at ppl or be rude- mean to others and treat others as YOU'D want to be treated! !!! why do we live in a world which we care only about whats on the outside instead of what's on the inside?! Please be kind to others and respect others- its what we ALL should be doing- no matter what!☺
evil g Stupid and ignorant breeds stupid and ignorant. isn’t it a shame?
Maybe if she dressed normally people wouldn't stare?
@@jbh666 No such thing as "normal."
evil g I would probably accidentally stare just because she looks soooo dope as for being rude I whole heartedly agree
I mean her makeup is horrifying
I really hope she will get better
Tara ........she could and so could many others if they helped themselves.
Disease is d/t nutritional deficiency and toxicity. A raw diet with plenty of pure water and exercise should help her.
However she and most people are waiting for a "cure" when a cure could easily be found in ones own backyard. ........an organic garden!
girl, those brows. teach me your ways.
sorry but i mean
Fr they're so perfect
@LowBudgetLavie
Her eyebrows are still good
She’s so pretty, she does not deserve this... 😕
Natalie Beck What is with you guys? If she wasn't "so pretty", would she be more deserving of pain?
"Only ugly people deserve to suffer"
That’s not what I’m saying, they are kind of like two separate thoughts in one sentence. If she wasn’t as pretty, she would still not deserve this.
So you mean that people who are not attractive or in other words ugly people deserve to suffer
Careful with punctuation on TH-cam, people are gonna attack you
she's such a beautiful person, hopefully this video raises awareness and money
+John Borja can you fuck off?
+Dea Garic Thank you
+Dea Garic lol??
Omg she’s so strong
if i were a billionare these are the kind of people i would try to help out, unlike most hoarding it all for themselves *HEM-HEM TRUMP*
😂
Agreed
I Feel So Bad!My life is like my IPad falls I'm Dead😂But This is terrible!
I want that small loan of a million dollars
psionicsquid He has the ability to do so many good things... but he doesn't. Bringing tears to my eyes that there's so many cures and so much love to be given from these rich people and they do not give it.
I wish I could be friends with her, she seems so nice and funny, also her style is awesome
Me too
Natalia Vargas im nice and funny
Natalia Vargas same here
Okay ppl let's just all get together and become friends! now who likes the color purple😁
same
I feel so sad for her 😩 I hope you get healed beautiful girl ❤️
this is incredible. I don't think I would be able to live with this condition. I would probably commit suicide so the fact that she is just so brave. Incredible
,
Ross_AFC me?
Suicide worsen problems and causes trauma to family members.
Norden Conrad but you have to understand that I don't think that I could handle this pain so the fact that she is is so awesome and impressive.
she's really pretty from inside the red skin. May God cure her... though many doctors are in for a research while performing rare things
The parents are amazing and so supportive of their daughter. God bless Samara and her family.
she's so beautiful. poor baby, i hope she gets better.
I feel so sorry for her and her dad, and I love silly hats too, I hope you live a happy life😭
oh honey, I'm so sorry. You are such a special, beautiful being. Please try to stay strong.
Why would you have a child when you have this condition!?
That's a pretty ignorant statement. Does it make you feel good to be offensive? Don't answer, I don't really care what you have to say.🚽
Jessica Smith No? I'm just telling you how I feel about this. BTW You are being preatty offensive as well. Plz explain to me in a better way why you think I'm ignorant?
Well there would still be the possibility the child wouldn't be born with it. Her mother seems rather healthy, she doesn't only receive her fathers genes.
+Misan Sathanas Using a big word like that doesn't make you look any smarter. By the way, is that all you got? If you think your hurting me by calling me a pretentious bitch, you'd be wrong. I Don't know if you're a little boy or little girl, but you'll have to do a lot better than that because I've dealt with many fucktards in my life, and you're pitiful to say the least. Go start an argument with someone else, you won't win with me! 🚽🚽🚽
+Misan Sathanas Because you are dissing me for caring for others. You have no real reason to put me down, and I haven't said anything insulting to mature, intelligent, and kind-hearted people. Nope just ass hats like you! I'm going to run some errands as I have better things to do than try to fix stupid. Go ahead and think of an unfounded and unintelligible thing to say while I am gone, or will you attempt to troll someone else? You can't hurt me, but if you start picking on another innocent person, I will most likely find you and make you look like the absent minded fool you are, if they don't do it themselves which I hope they do cause I can only tolerate your crap for so long.🚽🚽🚽
OMG IMAGINE THE PAIN😭🤧
Jasmine Tingeim sehuun❤
Oml your profile picture bsksbsjsvskdbd.
"The temperature must stay at 62 degrees!"
Mr. Krabs
Kiki G "Don't. Touch. ME THERMOSTAT!!!!!!!"
Kiki G OMG LMAOOO
Dont. Touch. ME THERMOSTAAAAAAAAAATTTTTTTTTTT!!!!!
If you have such a debilitating condition why would you choose to have children? You can adopt or something but it's awful to create a child who could live a life of pain
Sara Grace Right? I have a few friends who suffer from disorders or have an increased risk that they fear because their parents chose to reproduce and subject their children to suffer the same symptoms they have, and struggle more than most already have to.
I'll never understand why people are so set on making their own kids when adoption is there.
I really feel bad for her she acts so sweet
IM PRAYING FOR HER
they heard my mixtape
Even though that's fucked up to say. I did have a little giggle.
I got to agree with Fabian
+Fabian yeah some positivity is always nice
+Ermergerd Rernderm Persern or humor lol
+Fabian Nice name
I hope she gets well (also the father)
hard to imagine how life must be like for them.
😪 God please heal this child 🙏
I wish I had a million Dollars to give to her😭
How has my profile picture got anything to do with hackers being stupid.🙄
Would that help her?
@@elianastrong8125 yes it would so they could pay for the things they need so the won't get hurt or even die
me too
she is amazingly beautiful and the best I hope for her happiness and never want her sad
Poor love...she's such a sweet soul to have such a cross to bear! My heart goes out to the whole family!❤❤❤
she is so beautiful and talented. god bless her.
She's so adorable. 😭❤️ I pray for her.
Ya same
some time people are dealt a bad hand in life. It appears that she is making the best of it with what she has to deal with. Prays and hope God continues to give you strength that you have had...
I've been through the sickness long time and I can understand this young lady she is in pain
*$60,000 for THERAPY!!!! WHO CAN AFFORD THAT!?!?!? THIS IS OUTRAGEOUS!!*
Imaan Ahmed The therapy is very expensive because its really rare to find something to treat a disease, like finding the cure for cancer would you really make it free? Or cheap? Its takes a lot of time to find a cure for a sickness.
I like how she is always so cheerful
God bless this young lady she is wonderful and she is sweet and she deserves this surgery/therapy
She seems like a nice girl and funny hopefully she can find a treatment
She should make a gofundme page so that she can get the treatment that costs 60,000 dollars! I would donate!
I really hope she does! So many people would donate to her and it will help her so much.
Ikr there's so many ppl out there that get money donated to them for breast implants or something so unnecessary where if they can't afford it themselves shouldn't be getting it done. Then there's this poor girl who can't live her life bcuz she doesn't have money to pay for the process to treat her disease. It's so sad. I think procedures to save your life or to help you have a long healthy life should be free.
+MyLifeAs Liv Is there really a treatment? If so, we should reach out to her. I would definitely donate too!
+Sally Shopkeeki she mentioned that there was one treatment that might work but it's very expensive. But we should try to donate money to her!
Some disabilities aren't viable! She is so brave coping with her condition day to day. I realli hope they find a cure very soon!! If i had tons of money I'd happily donate it to the family
She seems so nice and is probably really amazing when you meet her.
People are looking at her all the time because of her hair, hats, makeup, clothes. Some may look at the condition, but her eccentricities are more noticeable.
that's what I was thinking.
Number One so what? She can express herself.
Says someone most likely without a health condition that makes people stare...
Number One BUT... SHES SO BEAUTIFUL
She does not deserve to have a two conditions. She is a beautiful girl and I think people should make a charity for people with her condition.
Awww, poor sweet kid. I hope things get better!
No! I feel so bad for you Samara! 😔You are absolutely gorgeous. I will pray for you to get better❤️❤️❤️❤️🤗😔
Poor girl. Please god, help her.
She’s still precious..seriously
I love how no one's talking about how she can't afford a surgery that might help her. Literally no one here cares about the state of health care in this country. How?
If I had something like this I would be too scared to have children, fearing that I’d give them a horrible life for passing my condition to them
Exactly.. I have this condition and I would never.
But can't blame the father..
It's very rarely to be diagnosed correctly.
So probably he didn't know earlier or appeared after her birth.
She is beautiful and absolutely correct correct to say when you’re sick and rich it helps. I hope they find a cure soon, people who don’t have money for treatment it’s horrible that they have to suffer.
I hope she sees this comment. I had this to some degree. Around 4 years ago my problems started, I felt like my body was tricking me. It all started with very hot tights, and then it transfer to my feet and hands. I could not walk more than 5 minutes as my feet were literally on fire. I didn’t know what the hell was going on, I went to several doctors and before one doctor diagnosed me I knew I had Erythromelalgia but he confirmed it. When I discovered there is no treatment let alone a cure my whole word crumbled. I was very active before this. And the taught of not being able to walk because I was so hot, was so daunting. Besides being hot all the time it was painful too. I remember I had to walk 15 minutes from my work to the station, that was the worst part of my day. Fast forward to 2022 I was diagnosed with cancer, lymphatic cancer. I was referred to haematology, blood cancer. So in my mind I think, this had something to do with my Erythromelalgia and I was right. I started chemotherapy. It was awful but anyway, I can say that today I don’t suffer from Erythromelalgia at all. I think all this symptoms over the years that included fatigue, low iron levels, burning feet and hands had to do with my cancer. I’m not saying that she may have the same but this is my experience and what happened to me. That is one of the most horrifying illness that one can have. Cancer was obviously bad but I can’t even compare if I would have still have the Erythromelalgia today, thank you God. For those that only experience this awful illness I know how it is. Even if is winter you feel hot for me it only worked to stay in bed and not do pretty much anything, I was just watching TV all day long as this was helping not trigger the hotness in my feet. I really hope one day we can find a cure.
I love the flowers in her hair!
Beautiful girl.. our love and prayers from India. Be strong dear..
Omg her headbands are amaze #adorbs
Desiree Lankford ? English please lol
thank you!
@@rosefae7393 it's called slang :/
@@Jasmine-hp8bm ik lmao
Your really pretty please never give up
OMG, she is so sweet and happy, I feel so bad for her.
Aww poor them this is so sad I really hope they find a cure for this it must be super hard walking in their shoes I feel so bad for them 😥💜
Yes, Go Fund Me would pull some money in. I would definitely donate to this cause!!!
Wow she has such a nice loving personality. Good for her 👍
I can't imagine living in a country where I can't get health care for free. Poor people.
wow dude that fucking sucks.
can't even imagine having to go through that
I’m so sorry😞 I’m going through this as well and it’s so painful... it really affects my every day life..
She's so beautiful. God bless her and her family❤
She's still beautiful 🥺❤️ ... Looking at this video I've learned to appreciate the little things in life & not complain about the small things because there is people going through worse 🥺🙏🏾 ... May God bless BOTH of them & I pray they find a treatment for them 🙏🏾❤️ .
Aww, I want to be her friend.
why doesn't she do a desk job from home? keep the ac running, turn one smaller room into an office so she and her father can share it during "work hours" and if the room is small, then keeping the temp constant is easier and costs less?
I mean, it'll be hard but.. maybe?
I know there's no real cure yet, but isn't there at least a way for them to stop being in so much pain? C'mon science and medicineeeeee
I wish I knew you. So that we could be friends and hang out. Dont give up and Stay strong beautiful !!!
I'm so sorry I'll pray for you
Poor girl. I hope she’ll find cure soon. I can tell she’s really suffering but still her flamboyant self is still there. God bless her and her family 🙏🏻
She is such a buetiful sweet strong happy woman. I literly cried while watching this like i could feel her pain this is such a strong video and i agree i would LOVE to be friends with her. I really hope they find cure. And i just now thought of this; what if someone did like a fund raiser to raise money for her to get physical theropy. #pray4her
I have a mild case of both of these diseases also. I laugh and say my temperature gauge is broken but I totally understand the intense pain, and nobody I've ever met really believes me, they all just think I'm nuts or a liar. I'm grateful I don't have it worse. So far it mostly just affects my hands, feet, and face. Embarrassing and every moment you feel like you are on fire feels like forever but fortunately I've had some luck controlling it by being a baby about temperature changes.
you don't have children when you have such a terrible genetic condition, the dad is selfish
I'm so glad I'm not the only one who caught that. He then said her having it was the worst part, but you have it and knew she could've gotten it, that's on you
But his legacy. 😢🙏🤡 /s
Also, the mother bares responsibility as well.
I’m so sorry you’ve suffered hun.