Recommended to me 3 days after you found it, it broke my heart watching it and destroyed the broken pieces after reading the comments. May she rest in peace.
I think one of the things I now find so heartbreaking about Claire's journey is she got SO CLOSE to the time where a real breakthrough was made. Seeing other people with CF have such incredible results with Trikafta is amazing but I often think of Claire and all the others who missed their chance, such is life but it still sucks.
In case you guys don’t know: Claire had passed away September 2nd 2018. She received her transplant but then suffered a massive stroke. She was put into a medically induced coma. She was taken off of life support September 2nd 2018. Rip Claire, you are now free from this horrible desease.
Already gone???? Please tell this poor girl’s still alive!! She’s getting a lung transplant so let’s keep our fingers crossed! Don’t write her off just yet!! She’s still in her early 20’s and life expectancy is over 40 these days!
I just rediscovered her again. It hit me like a brick when I saw all the comments that she was dead because the last time I was on her channel she was talking how she was getting healthier and she was so optimistic :/
This sucks. I watched the video and really liked this girl. In my mind I was really rooting for her and then I go to the comments to see she has already died.
@Angel Izazaga her living would have been better. immunocompromised or not there would have been a chance that she can't even get the virus, or would be an asymptomatic carrier. and if she did get it. yeah it would be likely she'd die because she's would already be sick. but even then there's still a chance of recovery
I know, it's sad. One can't say she didn't make the most of the time she was given. They say people who are terminal become wiser through introspection, and Claire was an excellent testament to that thought.
@@davidadams2395 Because at that point everything we generally care about loses all meaning. In front of death and not knowing what happens next. You start questioning what's the point of everything.
21. She was 21 when she died. The fact that there are so many who die before ever really experiencing life is devastating. And living with the knowledge that you have an expiration date. I can't imagine how it would feel to know when I would die.
Cheezy Films Productions I’m turning 21 in a few months. It’s not the time to die, it’s the time when life starts. I cannot imagine knowing my life is to end in a few months at just 21...
Emmie Conner I’m very sorry to hear that, that’s tragic. It makes me appreciate the fact that me and the people around me are well and healthy. But anything can happen anytime.
While I agree, we all technically have an expiration date, and could go at any time. In some cases having to face your mortality can force you to live your life to its fullest. Some can live more in 20 years then many do in 80.
Darric P.L they take your organs when you’ve experienced brain death. This is where your brain is completely dead and unable to work. There’s no true recovery from this, it just like normal death except your heart is still beating. They can take your organs several hours after brain death, and they can take your tissues, which fall under organ donation, within about a day after total death. Please don’t perpetuate false conspiracies about organ donations, as there is already a shortage of organs and several misconceptions regarding organ donation. Actually look into what organ donation truly means, as you have no idea how the falsehoods that you’re sharing are actually hurting people in need
@T K How insensitive do you have to be to say something like that to a mortally ill person? You are as thick as the OG poster. The hell is wrong with people these days..
@@wyldeyouth she always took it as a compliment. When she would live stream people would tell her that all the time and she liked it. Don't get offended for other people ❄
Claire I've followed you for so long and my heart was sinking at this update. I know a lung transplant is by no means simple or a cure-all and is its own excruciating process with its own concerns but I think it's so brave that you're going for it, and I really hope it gives you back the autonomy you deserve
My friend with CF got a transplant a few years ago and it was so smooth and incredible and he’s thriving right now. There’s hope, plenty of hope, that you could experience the same thing! Praying for you right now, girl.
Jenny Nicholson yes, we really hope that and pray for you Claire❤️ Thankyou for everything you gave to this world, it’s kina time to just recieve now. To recieve hope and love and rest. Love you Anina Joy
Claire, whatever happens - please know that you have made a lifetime of a achievements already and changed so many people's view and perspective of the world. Myself included.
JOHN MASTERSON it was a typo and stop embarrassing your self by trying to act cool by swearing in every comment you make and I won’t get mad or annoyed at you just to make you more angry because I don’t need to be sad for people like you 😂🙄
It's true life is extremely unfair there are a lot of people having the time of their life and others wishing that they would die so the suffering stops. you just have to accept wathever life brings to you.
The problem is people have lost their reason behind living. God always takes the blame because people forget he's the most just. It really sucks what happened to her, but who knows for sure she might be having the time of her after life in heaven and most of us here are living a mediocre life
@@mojo6112 I can't agree nor disagree. As a nonbeliever I don't feel the need to blame God. But i understand why people do. But you're right, people take life for granted until it's too late.
No judgement here. Honestly sometimes i wish i could believe because i know it is comforting for many. I just can't. Sometimes that's all people have left, faith.
Apparently, the stroke didn’t kill her right away. She was in hospice for a short period, and I guess when her condition became “brain-dead” (that is, she would live but only in a coma and on life support), her family decided to turn it off and let her die instead of prolonging her suffering. It is very sad, I’ve only known her since yesterday, when RU-vid recommended her channel to me. By this point, Claire had been dead for 3 days. I feel bad that I didn’t know her personally, nor even through the channel while she was alive. But Claire is an amazing and beautiful person, and I could tell that from the first video. My sympathies to her family, I too have lost loved ones to illness, and it is an indescribably painful experience, and how powerless one feels to stop it from happening. And when the worst happens, your feelings are a mixture of intense grief and relief, because you know your beloved isn’t suffering any more. And Death isn’t the complete end, it’s only a temporary setback. You will see Claire again, in a better world, and she won’t be sick when you see her. Until then, just try and live your life to the best of your ability, and make choices that would make Claire proud.
To Claire's parents. I am a 57 year old women that suffers from PTSD and depression. When I feel life is getting too much for me I watch your daughters videos and her love for life makes me question my suicidal tendencies. So even within death you daughter is saving lives and an inspiration. I hope you never take her videos down. Thank you. You were so blessed to have such a beautiful soul in your presence
@Dude Juststop you don’t know anything about her life though? And yes, the brain is an organ too, it can become extremely fucked up too. Your brain manifest your reality, it can lead to some pretty miserable realities for some people. And she never claimed to have a “level up”, she quite literally stated she comes here to remind herself of how lucky she is. Ffs!
Claire wanted to live more than anything, but she knew and was ready for the time that took her life post transplant. She didn't regain consciousness and her family were there when she passed. The biggest gift we can give Claire and all with CF is to become organ donors !
Because of you, I just checked my organ donor status. Turns out I wasn’t registered (didn’t complete a step). Because of you, I’m now an organ donor. Thank you.
Nobody wants my organs (or blood) because of T1D, otherwise I would be a donor. Seriously no clue why people would be against being a donor. It just should be the other way around. Everybody being a donor by default unless they opt out for religious reasons or whatever.
I had a girlfriend with cystic fibrosis. She was one of the most amazing people I’ve ever met. We bonded over our illnesses at first because I have severe hemophilia but she was funny, and kind, and one of the most beautiful people I’ve ever seen. She went to college, played in a band, started a scholarship named after her grandpa, she was so much more than her illness and if you have cystic fibrosis just know that you’re more than your illness too.
Clair I’ve followed you for years now. Words get in the way. Thank you for sharing such intimate details of your life. Love you always. Keep us posted if you can.
Yadira L. Yes it is, the other one started taking her money and treating her badly so she left it. Watch her video on what it's like to die. She speaks about why she left the clarity project. This IS her channel.
dude i also felt like a piece of garbage by watching her in her situation being so determined and comparing it to the whiny ass that i am, its definitely time for some changes
She's paying a lot of money to survive a little longer and still has the kindness to not let us wait about 5s to watch an ad. *If I die you are going to find my lungs in your letter box* Edit: thankfully she must of read this comment cause now there's an ad + Never got this amount of likes for anything before my highest was 9😂
The inner strength she had is so inspiring. Though she was dying and was probably terrified she still smiled and had such a positive attitude regardless.
Casey Hardy imagine we were both kidnapped and locked in a small cage together with no food or water. We’re both stuck in there getting very hungry and thirsty, what would you do?
Just it happened to me. I got kidnapped along with a woman, we spent 5 days in that cage got soo damn thirsty it got unbearable. We both wore polo shirts, no food either.
I’ve got CF I’m having such a hard time at the moment, they’ve just found 3 infections so just started my IVs today. I used one of your videos in my awareness assemblies, you’re an inspiration to all of us!!☀️
I have depression and you being so positive helps me to try and see the world as something beautiful. You are an inspiration to me, I remember finding you out years ago and I’m so glad I found your new channel💓
Niamh Docherty exactly, That's why I love technology in this way we can be connected and having help from people so far away they influence us even stronger then people around us!
same..! I also have depression and see Claire as an huge inspiration and role model! She gives so much hope and lives her life! I really try to see things like her sometimes...
I know Claire is having a blast everyday in the afterlife. No tubes and endless friends. We miss you so much down here but only the angels truly deserve you.
@UCkTpm76juIRoQhDT-vlgQow you idiot, learn from good beautiful people like Claire and the OP. Why you being a loser and wasting your own time and everybody else’s trolling. You’re obviously an unhappy person and I’m sure you have your reasons but turn your life around. Quit lashing out at others and improve yourself - start now
God I loved this girl 😭 I listened to her podcast with Shane so many times. I’ve never heard someone talk about death the way she does. An inspiration. RIP CLAIRE ❤️
She really seemed to realize all the risks in the procedure. She was beyond her years, an old soul. She helped me alleviate some of my anxiety about death, but I'm still so broken about her passing away. She's made an impact in my life for sure.
I use to cry at the thought of death. It would cause me really bad anxiety too. And she helped me cope with that through her videos and positivity in the face of it all. May she rest in peace. ❤🌹
She truly was amazing. I believe we are all here for a purpose. Whether it be to help someone, teach someone, whatever our reason....we have a reason. Claire touched so many. Sadly I didn't find her until just this week. I am fascinated by her courage. Her love. Her light!! She is Very bright angel. Of that i'm certain. She is doing everything her earthly body would not allow her to do!! Rip sweet girl. Breathe.....
The truth is, people with CF have to grow up really fast. They have to learn to embrace the fact that they are going to die. Until there is a cure, this is the reality of living with CF.
Christine Graham Yeah, I'm pretty sure Claire will get to live at least 40 years, she'll probably marry someone, and even have children and such. I'm confident things will turn out much better than she currently thinks.
That's awesome. My friend Suzanne who has CF got a double lung transplant 13 years ago - she's now 45, just got married last year and is enjoying life to the full. :)
Thanks goodness, if they can live, she can live too..i.am.so happy after knowing that there are people living with CF..hooooorrrreeeeyyyyyy, now i have this ray of hope that i can see her live a longer life ,before i read your msg i was so depressed, but now i am bit relaxed
I've been watching you forever, and the thought of you suddenly not showing up on my subscription box anymore is just so heartbreaking...but i know it wont come to that. Ive never watched anyone on here or in general be as strong as you. I mean - here i am, three years younger than you - complaining about school and my period.....Theres a reason why you keep breaking the life expectancies - i mean, the doctors thought you'd die at 5 - but here you are 16 years later making a difference in the world and living more than any of us have ..even if your body may not be strong, you and your brilliant mind and courage will get you through this transplant. I believe in your Claire, and always continue to believe in yourself.... I really hope for the best and that you get the lung transplant
mOST people who live to be 100? stop hating and being vengeful.That statement cannot possibly be true, do you know what most people over 100 have seen and done in their lifetimes? Besides making videos
Five EyeSights shut the fuck up and dont hate on my posts. i can post my opinion wherever i want and NOTHING was being vengeful. MOST people do not care to do the amount of good that she has. she started 3 foundations, wrote a book, went on campaign speechs while carrying her oxygen tank unable to even breath on her own. what the fuck have YOU done but troll videos and leave shitty remarks for people in mourning over losing somebody they cared for? way to go loser. hope you feel awesome about your loser comment.
Wow. You call her the names that your actually being. Claire did a ton. Saying she did more than most who get live a full life is not an insult to anyone. Most people just don't touch as many lives as this woman did. You are very hipocrytical.
@@opiumbrella1367 when did i talk to you, just getting in a disgusion your sick! And i can say what else i want I'ts my opinion so i don't want a stupid ass getting in my way!
You've spent these 21 years of your life helping other people. Watching your videos definitely helped me, and so many other people and no matter what happens in the future I'm glad you get to know that your life has really made an impact on the world and will continue to do so long after you're gone 💜
It's always the dying folks that wake the rest of us and remind us to start living! We are all indeed very fragile beings, each day is a miracle. RIP lovely soul.
This is why I'm an organ donor, any out there that isn't please consider being one next time you update your license. Anyways, it so nice too see another video Claire! I keep wondering how you've been. I want to see this transplant go well and give you many more years, even though it's not a fix, it gives more time for science to catch up with new treatments. I'll be praying that is what happens!!
95TurboSol I am too..I just graduated nursing school and had the opportunity to do a rotation in the ICU..and unfortunately had a young person die..but I was able to see how the organs were able to help quite a few people..you can so greatly change or save a life💗
also, it isn't always as easy as marking it on your driver's license, depending on the state you live in. So please go to organdonor.gov and go thru the process depending on your state. I'm in KS and I had to fill out an extra form with witnesses. PLEASE COVER YOUR BASES AND DON'T RELY JUST ON YOUR DRIVER'S LICENSE. Cheers
I used to get annoyed at comments like this, but I've had a shit day today (essentially getting a cold on top of a handful of chronic illnesses is a pain and frustrating) and your comment made me smile. So thank you for that x
Claire you are not alone in your situation. I too have a terminal illness. I have metastatic Cancer. Oncologist says the Cancer will eventually take my life but also says he does not have a crystal ball so can't tell me for sure when. The one advice that my oncologist gave me was he told me to start living my life now!! So thats what Im doing. In the last two years I have traveled the world and even just recently bought a motorcycle that I'm going to ride all summer long. I am single, alone but I have family and friends to help me through this. Claire I know with your health declining it's hard to still do the things you want to do, however still try to do what you can perhaps with help from others that love you. Solidify your plans for the lung transplant and then let it be and after continue to live your life right now, in the present moment. Cheers.
You probably get annoyed when people call you an inspiration for having an illness, as I do as well, but thank you. My disorders are not terminal for the most part and probably won't kill me, but hearing from others that "you can't let it stop you" helps so much. I'm 16 and want to heal others, so I have been working my ass off despite everything going on to accomplish my goals of becoming a vet. One year from now I will be 17 with my vet tech degree which I'm super pumped about. I also have an internship at a vet hospital which is a lot of physical work so it can be very hard at times, but I push myself. At the hospital, I am surrounded by death. Ironically enough, death has become a large part of my life, and I'm okay with that. On my second day of my internship, my boss and I euthanized a very ill dog. It was incredibly sad and my heart broke for him, but it wasn't hard to do. He was suffering and even he knew it was his time. We all reach that point of acceptance eventually, where we realize that it's the quality of life not the quantity/length. This dog had a joyous, love filled life and was genuinely happy. When he knew it was the end he was okay with that. I believe he felt fulfilled in a way- he had done his purpose of bringing joy to himself and others. I tend to use him as an analogy for being ill in humans. He had treats and played with toys, and you are traveling the world on a motorcycle. That is incredible, and something that many people, even healthy ones don't get to do. You are living life to the fullest and reclaiming your happiness. This is one of the bravest things anyone in your situation can do. So, I do not know exactly what it is like to be in your shoes, but what you wrote has definitely given me a more positive outlook on life and all the challenges that come with it. I wish you the best with all of your adventures and excursions. Whatever you do, don't give up on happiness
Edward, You are so right. I have 2 terminal illnesses, cancer & a lung disease.Treatment didn't work for cancer; is no treatment for my lung disease. Was told I probably had months to live in 2012, but I'm still here, even though I'm told it's not medically possible. I too decided to live a full life the best I can. Like you, I also ride a motorcycle (Yamaha Maxim). Claire is right, serious illness demands much of your focus, (colds can easily turn into pneumonia etc.). I mostly require oxygen but I do go without sometimes, when I need to pass myself off as 'healthy'. I know I can do that until my oxygen drops into the low 70's (I pass out below 53😀); it's risky, & I try to avoid doing any of this if possible. But life sometimes gives you tough choices. You can't let the illness totally run your life or else you have no life. I too am now single, (my husband died from a heart attack last year), & have had to return to the workforce. It's hard disguising the illnesses at work, but luckily my job as a legal consultant mostly allows me to work at home. My options for work being limited; I have an emotionally abusive employer so its a high stress environment. But it is what it is; overall everyday is a blessing. I have a beautiful home, and (mostly) a beautiful life. I consider myself truly blessed, am proud of my strong body/immune system, & know when my health eventually declines I'll adjust & still live as full a life as I can. Meanwhile, I'll do my best contributing in a positive way, & love every minute of it.
cary ulmer i love your outlook on life. I’m sorry that you’re going through so much stress but you seem to be coping really well. The fact that you’ve surpassed your life expectancy by 6 years is incredible. I’m honestly awed that that’s possible for someone to have so much fight in them. As for your husband, I am so sorry for you. I know that must have been very hard as well. And your boss sounds... well, like a complete dick. You are surrounding yourself with positivity and not wallowing in it. Of course you’re still having you’re struggles, some of which could be terrifying, but you’re doing great. I wish you the best, and you’re really kicking your illnesses ass because you’re not letting them take your happiness
My wife had a double lung transplant at toronto general hospital . she has cf and got new lungs on Mother's Day 2013 it's a tough journey and scary at times but it was great success for Gloria .stay strong and god speed wayne and Gloria lambert
Gloria Lambert oh w0w..I was beat1ng myself up not knowing how to make my mom happy on mother's day..what can I make her, buy her, take her...? ...and here you are jst blowing my bs out the water..wow. I must always improve and not beat myself up so much about life's imperfections or flukes. #StayINFINITE
That girl deserved the best for what she's been through. I am CF too, just turned 21 this month. There is no life expectancy for me as I am in a blessfully great condition. My best lung test was 113%, currently I am around 80% but I've been through many infections during the past two years and it is still better than a lot of healthy people. I know I can raise these levels with physical activity and that's why I had 113% because since I remember I've been doing sports. Football/soccer for american readers, basketball, running, swimming, workout, gym, gymnastics, muay thai, bjj, boxing, wrestling and I am still doing to this day and I am in a great condition and shape but I can relate to her feelings and ups and downs and I hope she had her very last moment as she really wanted it to be for that situation. Rest in peace Claire!
Holy shit dude! How is that possible with CF? I thought pretty much all ppl with CF were like Claire. Were you just "lucky", in the sense that for w/e reason your CF just isn't as bad as others? W/e the reasons, congrats! Keep doing you!
@@daleowens7695 correct, I am a lucky man but I’ve been doing sports almost my entire life, since I remember. 6 days a week. I was into street workout, running, American soccer, basketball, then I was swimming, doing gym, competing, then I found my true passion which is combat sports. I started training Muay Thai and I’ve been doing it for 7 years now. I did boxing as well, grappling. I cannot really tell but without all this I am almost convinced I would be in a condition 10x worse.. the first 6 months of my life I spent in hospital with not so much positive predictions, I spent almost every Christmas alone (only parents were coming) in hospital due to infections, then I started doing sports, had 113% fev. Life can be beautiful with a little luck and hard work. I am pretty small naturally so sometimes people when they see me they worry if I can grab a box of 20kg for example meanwhile at the age of 15 I was deadlifting 120kg weighing around 55kg. I have developed top strength for my body and top endurance, I did marathons, many cool things for an “average” person. I love it and I’m only at the beginning! I also speak fluently 3 languages. I’ve done many jobs you’d do only with a diploma YET I don’t see anything special about me in this context, many people are capable of such things. The thing is you need to find your style and keep your head up! I know other people can do better than me but I expect from myself and I work for it, it’s not a blessing necessarily - I’d say it is getting to really know yourself and do what you do.
How do you breathe well enough to do all of that? 😳 Unfortunately for many of us with chronic/terminal lung diseases, our bodies can't handle that much exercise, and it is not a choice. But good job for you that you can!
Claire, you will get a transplant and will get healthy. Your years will be prolonged. I will say, "I told you so" exactly after a year. See you on May 24, 2019.
No, she's not. I know someone who had only 20% lung function when they got their transplant, and they were practically bed bound. Its been 2 years since their transplant and they're still alive living life. You only know what Claire decides to tell us. She knows everything about her health, we don't.
Your outlook on CF has changed how I handle my own chronic illness. Everyone tells me when I'm positive in the hospital, that they're shocked. I tell them to go look up Claire Wineland, haha. I follow others now, too, and have my own instagram, and will be starting up a RU-vid, too. You've started it all, given me a reason to not live in my illness but instead, use it as a stepping stone to help others.
Claire, you were born for public speaking! You are so eloquent and so soothing to listen to! I feel inspired by you not just for the fact you get to fight all of this everyday of your life but mainly because you got yourself to smile despite all the pain. You are the most incredible person I know and I'm so glad to live in a world with Internet that allowed me to 'know' you!
I found your videos the year I lost my brother to MS and your words have helped me a lot understanding life and what it really means to value our time on this planet, to enjoy the moment, even when it doesn't match this crazy ideal of perfection we have in our minds. It's not CF, but your attitude towards it what makes you special, Claire. If that operation is the only option, take it. You and your family are fighters. I hope you beat this whole situation and everything goes fine with the transplant.
It depends on the type of MS you have. At 16, My brother was diagnosed with a really aggressive form of the disease. Doctors said he could live 5 or 6 years but he stayed with us 13 years. During that time we meet other people with MS, many of them had treatment and could have a life as normal as the disease allowed them to. I'm sorry to hear you have MS and maybe what I said scared you but please remember your type doesn't have to be my brother's. Just listen to your doctors and don't focus on other cases because it doesn't affect everyone the same way. Never give up. I send you a big hug and all the best for you and your loved ones ♥
I wish you all the luck in the world on your transplant. If it can buy you 5 to 10 years that is huge. Science is always moving forward and there are break throughs every year. No one has a guarantee on life. The best we can do is try to keep the game going as long as possible. You are an inspiration to so many people.
I hope you get lungs 💗💗💗 busting out of the 30% zone would be fantastic for you, get that energy back. The dogs wouldnt know what hit them with the longer walks 😉 putting all my positive thoughts out there for you 💗
i remember watching her videos when i was younger and then i stopped for like 2 years then searched her up again. i found out she passed and i was heartbroken. fly high angel 🕊
I've always admired your choice of words when you speak, you have a great vocabulary. I wish all the best for you Claire, your very inspiring and I think about you often.
Your strength is evident in this video. CF and other illnesses make you more mature, by force. Our son, Eddie, has been gone quite a while, but we still remember. My prayers are with you, of course, and while we understand the prognosis, we refuse to abandon hope. I learned during my mother's cancer fight, that it is possible to accept reality, but hold out for better. My husband and his ex-wife were told Eddie wouldn't reach his teenage years, but he held on to 25 and possibly could have gone longer, but made his decision to stop treatment.
Exactly the same for me. What a terrible loss to lose such a beautiful, eloquent girl that had so much to offer the world... What a cruel world we live in sometimes :-(
Before I got my kidney transplant and was still on dialysis a little over a year ago I was in your spot (except kidney wise lol). I was in college and my mom had just died and my partner was about to leave for the military. I was on treatments for two years before I got the kidney. For christmas, all of my friends came home for the break to come be with me after my mom’s passing and just make it fun and make me feel better. I remember everyone holding me especially close but I didn’t realize (and they didn’t tell me until after I got my transplant and was healthy) that it wasn’t solely because my mom died but because I looked gravelly ill all of a sudden. My health went from doing okay to near death in about 6 months. I was suddenly in the hospital all the time and sick constantly and too tired to finish my treatments. I was always in pain and exhausted. My friends and nurses and family were all terrified that I was going to die. Then, January 27th, 2017, I got the kidney, and it saved my life. Perfect match. Still functions amazing to this day an entire year later. But you are so right!! It’s not a cure, just a treatment, and a lot of people don’t know that. However, I’m grateful for the extra time and really think it was worth all the risk and struggles at the beginning. I wish you nothing but the absolute best of luck and I hope you get any and everything good in the world xx
My good friend from college many years ago was diagnosed with cystic fibrosis in her early 20's. She was told she wouldn't make it and even if she got a transplant she would have maybe 10 years. She got down to exactly where you are now. She eventually got a double lung transplant. I haven't talked to her recently but she is well past the 10 years with the new lungs and in her 40's now. Praying for you. I have had different long term illnesses since I was very young but not terminal. Blessings in Christ.
MtnGirl & Bunny Im confused? How was your friend diagnosed with cf in her early 20’s. From what I know CF is a genetic disease that you’re born with. They found my cousin had it when he was 6 months old.
MySeasideRendezvous sometimes symptoms don’t appear until later in life. It is a genetic mutation that is recessive and passed on from parents but there are MANY (in the thousands) different versions of the mutations so everyone’s CF is different. In 2013, 6.8% of people were diagnosed at age 16 or later so it is possible. And since 1940, the average life expectancy with CF has increased from 6 months to about 37 years and 5 months.
I had no Idea, It's good to know. All my cousins and I are going to get tested to see if we have the recessive gene and if there will be a risk when we try to have kids. Thanks for the info :)
Claire, I pray you get your transplant and that your body accepts it with minimal disruption, I'm hoping you remain a fighter as you face the inevitable that we all must face...to know we gave it our all, to feel like we aren't trapped, that's all anyone wants. The absolute worst, most devastating thing to hear is "there's nothing more we can do" I pray you never hear that. I empathize with the thinning out of options and feeling like you're in a corner, a transplant is terrifying but I'm rooting for you along with everyone else touched by your eloquence and perspective. You're an intrepid fighter and I know, if nothing else, you'll keep going as long as you can and we all benefit from your example of how to confront mortality with grace. None of us are exempt and I for one am grateful, so grateful for your wisdom and insights so freely shared. Thank you Claire, you're in the hearts and minds of all of us, let's hope there is power on numbers ❤️🙏🏻❤️
I'm a med student and I've always really found your channel very interesting. You're so human and sometimes in medicine its easy to become desensitized to what people who deal with illnesses are really going through. You are so incredibly strong. Really hope you get the transplant and all the goes well
i discovered claire’s channel a while before she passed. it was so sad to see her go, honestly she’s one of the most beautiful people i’ve ever seen, not just physically but as a whole. i miss you claire, your new videos and inspiring words. you inspire me every day to take better care of myself and make the best out of situations that seem like the end of the world. i hope you’re happy, safe and sound wherever you are. rest in peace
I just watched the documentary of you with Justin Baldoni and I’m sure you hear it all of the time but you are such an inspiration. I could listen to you talk-about ANYTHING- for hours! Don’t ever apologize for being “bummy”!! You’re beautiful. I will be keeping you in my prayers 🙏🏼
Such a brave young soul. God bless Claire. I watched your story while I was on oxygen and diagnosed with PAH and had to get a double lung transplant. You gave me courage to talk about my health and share it with others as well🙏🏾❤️
Thanks a lot Claire for the perspective you showed me, because, me as a "healthy" individual, could have never imagined how hard it is to just survive with that kind of illness, let alone live and do the things you love doing, I looove rollerskating, and would be so broken if they told me I couldnt, or just swim or take a walk, gosh, Im impressed by how mature and smart you are at a young age and how much your illness has thought you and others around you, Im so glad I came across your videos in youtube and I love hearing you speak from your heart, Id love to be in one of your conferences but I live in another country, If the transplant happens I hope it goes flawlessly and give you more time, Sending much love to you girl! Keep strong!! :D
Im not "using" her in any way, and I don´t think its wrong just being inspired by someone, Im not putting her on a pedestal by being humbled by the way she lives her life, for you it might be simply living, but I guess that depends on each individuals point of view, I dont think she just "lives", she´s clearly achieved more at her young age than me and many people that are healthy and older. I don´t get whats insulting about that, but again, that´s just about perspective, I obviously never meant to be disresfectful.
You calling her life "simply living" sounds more insulting to me. Cause there's nothing simple about what she's going through. And there's nothing wrong with recognising her as an inspiration for others, regardless of their health. Many of us take our health, bodies, lives for granted and Claire is one of those people who just remind you of how blessed you actually are, with or without disability. And her strength in such difficult situations is something to admire, her sickness is certainly a part of her but it doesn't define her ✌ God bless
Dani Lepley You must be one of those people who hate your own life and you sit in your misery instead of changing the things you can to make your life better because if you were a happy individual you'd be happy someone was inspired by another human being who is dealing with a lot more than what most of us deal with on a daily basis. Maybe you deal with a lot with your own disability and that's why you come off as rude, but try to be a little more kind. It costs nothing.
Dani Lepley what a sad and miserable lil man you must be. What a sad life you must live. What a shame you need to live your life being miserable, sad and pathetic!
Claire, thanks for sharing this. Hopefully, all goes well for you. Being on the waiting list is pure hell. Every time the phone rings, you jump.. hoping that it's THE call. A close family member was born with a congenital heart defect. Watching a 5 yr old stuck in the hospital for months slowly dying and waiting for another child to die to save his life was a complete mindfk. Knowing that was the end game, and that a family lost their child suddenly (at Christmastime, no less) so that he could be a healthy, flourishing kid, still plays with everyone's heads. The only thing I can offer is take any counseling that's offered now, and in the future. He's asking odd questions that are being put off, and the parents have just ignored the issue. This is only going to make it worse as he gets older and really realizes the implications of what it took for him to live. Yes, a grieving family made the ultimate gift (6 lives saved, and many more helped) during the worst time of their life (car accident) and I admire their courage. It still doesn't change the facts. Never forget the impact you can make, even after you're gone...
I sincerely hope that no one in his life (including you) ever does anything to suggest that he should carry even the slightest amount of guilt for where his heart came from. The donor child would have died regardless. The decision to donate the child's organs means that his or her death had some positive outcomes in addition to the devastating one. That is a fact. It doesn't need to change.
Mycel Never said anything about a link other than one gave and one received. It's the ultimate gift and honor, in my option. As a former paramedic, I saw my share of horrors and one thing that always stood out was the ones who gave permission for organ donation. I never understood the selfishness of not wanting to help another live. If it's for religious reasons, that's one thing but I can't tell you how many parents didn't want Johnny "hurt more than he already was." It always stood out especially the patient that gave everything - eyes, femurs for bone marrow, lungs, heart, liver, etc. If mine are viable (I have a chronic illness) then take what you can. They'll do me no further good when I'm gone.
I love how she was just vibin while explaining something i would of been crying and shaking over 😭 I'm so sad to read that she passed, but I'm glad that she's in a better place.
Just here to say that I wish you best of luck to get on that transplant list and get a lung transplant in time! If it's a possibility for you not to feel trapped then it's absolutely worth a shot.
Sending you lots of love. I donno you but i am glad you are on this planet. You do so much good. You dont owe us anything. Its nice you share it with us tho and i really hope people know that this is a priviledge for us that you share this with us and i hope that people react with that in mind. Also i now want mexican food.
This girl inspired me and made me want to live my life to fullest, because it is so so short. Her death hit me like a ton of bricks, but the impact she made on me and millions of others will live on forever. RIP Claire. We love you.
