What can be scarier than death? Maybe living a life without any purpose or not doing anything good to the world with an excuse of being unable to. Understanding this at a very early age is no less than living a meaningful life. It’s the life of a little girl- Claire Wineland.

It’s the life of a girl who outlived all her illness and challenges and becomes what she really wanted to be. It’s a story of a girl who was dying her entire life and yet she lived a proud and meaningful life.

Many of you might already know her, but we didn’t. We didn’t know her, I never even heard her name just a couple weeks back. But one of you guys recommended her and wanted us to know more about her life. And so we did. While knowing about her life, we felt like her 21 years had more meaning than 80 years of an ordinary man. We binge-watched all her videos available on YouTube in one night and felt so inspired.

We believe there are so many people who are suffering challenges and being a subject of pity need to know the story of Claire Wineland.

Story Of Claire Wineland

Claire Lucia Wineland was born on April 10, 1997, in Austin, Texas, US, and was immediately diagnosed with a disease called Cystic Fibrosis or CF with an average life expectancy of just 10 years.

CF is a genetic disease that causes an overload of mucus to accumulate in your body and slowly causes organs to malfunction and fail and especially causes frequent lung infections. It is a very high-maintenance disease that requires utmost care of yourself.

Claire lived all her life with this disease. The majority of her life was spent in hospitals. She never lived a normal life. Her daily routine was taking care of herself, starting with nebulizers and then medications, having pills, checking blood sugar, loading up insulins, treatments, breathing & working out, and then another set of pills and weekly or monthly surgeries. A quarter of my life was spent this way.

She herself said, “As a teenager living with CF is hard, it’s painful, all your will is running through taking care of yourself”. But the good thing is, She was much bigger than her illness. She kept giving meaning to her life. She lived her life in any way. She also appeared in The Music Man at age four.

She said that there was no role model with challenges like her and giving good to the world. But at the age of 11, she drove some inspiration from Stephen Hawking with similar complications but has done tremendous work for humanity.

She had incredible support from her parents. Sometimes they had to take a long leave from their full-time job to stay with her. To spend some memorable time with their daughter.

Other relatives, and friends came to visit her daily asking about her condition and felt sorry for her, but little Claire always wondered why I’m the subject of pity? I’m having my time. She even decorated her hospital room because of lots of hospital stays.

She also said, “The hardest part about CF is guilt, the guilt followed your entire life that my parents are sad and heartbroken because of my fault”.

Claire’s First Encounter With Death

At the age of 13, she went through a routine surgery that led her to near-death afterwards. Just 2 days after the surgery she got blood sepsis, which is an infection in the blood. The body temperature went up, oxygen saturation dropped, and then there was a complete lung failure. She ended up in a medically induced coma for 3 weeks.

After the ventilator, she also had been in an oscillator, and then there was a history that no one with a disease like Cystic Fibrosis has ever survived this and successfully come out of this.

She said, “I was like, I’m dying. But it’s fine. I’m prepared for this my entire life. I knew this is gonna happen”.

But yet she survived the terror of being this close to death. She said in her documentary, “After I came out of this, I was mad at myself for being scared. I already knew this was coming. After terror left, I was in grief at how much potential there was in me and how much of that I didn’t utilize. It wasn’t like, god please save, I don’t wanna die. It was that there is so much human beings is capable of doing, and I won’t be able to do that.”

She also had incredible support from her parents, friends, online community, and loved ones. It was the point when she realized that the support she received wasn’t available for everyone facing CF.

Claire Wineland’s Meaningful Life

Cystic Fibrosis is a disease that requires lots of hospital stays and keeps you isolated from everyone else. Parents with a child having a CF have to take a long break from their occupations to watch their own child die. How hard it must be for them to leave the source of income that supports their living, rent, and needs.

All the money that has been raised for CF patients is spent only to find the cure, not to support the families suffering due to this.

And hence, Claire Wineland at the age of 13 with the support of her parents founded the Claire’s Place Foundation, a non-profit organization to provide support to such families. She found this organization at her weakest point in life.

She never looked back again. She became a public speaker, a CF activist, a TEDx speaker, and a social media personality. She started her own YouTube channel sharing her wisdom. Every single video she puts on her channel is a bouquet of inspiration, talking about her illness and how to deal with it. More and more people around the world started connecting with her. Every day new opportunities popped up. She became an advocate for those living with terminal illnesses.

She helped a lot of families having CF children and are suffering a lot from this illness.

Claire Wineland
Image Source- TEDx Talks

She also had a hidden talent for singing and writing. She herself wrote a song at the age of 15 and sang in her own angelic voice. The song is called- ‘Galaxies’. Here’s a little glimpse from the song- ‘And I’m broken but I’m fixable and that’s the worst kind ’cause it means that the fault is on me.’

She always said, “Me being sick can’t determine the quality of my life”, “We should change the way we treat sick people, we should stop pitying them and we start empowering them. If you pity someone who is sick, you are snatching their power.”

Therefore, she kept empowering other people’s lives through her foundation and her life. The cure to illness isn’t just about fixing yourself or being healthy, it’s about fixing the way you view your part in society. She said, “Health and money don’t mean everything unless you’re actually doing something with it for the betterment of the world.”

In 2016, Claire was also featured on the CW network series- ‘My Last Days’.

Meanwhile, her life expectancy was moved from 10 years to 13 years then from 13 to 16 and then 19. In between all these years, she lived her life the way she wanted to, despite never knowing if she ever able to celebrate her next birthday or not.

In one of her TEDx talks, she said, “I was at the Thai restaurant when I was 18 and I was sitting with all my loved ones, we were having our time, everyone was laughing and enjoying and I realized something, that I became the person that little me would have been inspired by.”

Claire Wineland

The Last Chapter of Claire’s Life

Claire always heard that there would come a time in her life when she wouldn’t be able to do anything. Over time her lung function also kept on decreasing from 50% to 40% and then 35%, to 25%.

In 2018 she had to go for another lung transplant. She posted a video on YouTube asking for a little help and how her lung replacement needs tons of money. She cried and felt embarrassed while asking for help. She said, “I don’t care if I get new lungs or be healthy, obviously I do but I just want to be capable enough to do something to give to the world.”

And the response she got from all around the world within 3 months was something extraordinary. People donated to her as she was her own daughter.

On August 26, 2018, the day came when she had a lung transplant. The surgery happened and went good. But,

Afterwards, she had another complication. It was the stroke. Though she always came out beating the odds before, this time it wasn’t like that.

Her mother, Melissa Nordquist Yeager said in her documentary, “Her father and I were in the room with her. And we held her and said our goodbyes.”

She passed away quietly on September 2, 2018, at the age of 21.

Her wisdom became ageless. A girl who went over 35 surgeries her entire life, left us with a great message- ‘How to live a meaningful life.’ She bathed the darkness of the world with her shine and light. She left all of us with some hope, courage, determination, passion, love & purpose. Just think of all the people who behave differently from now on because of her impact.

Claire Wineland’s Legacy

It’s the year 2021, it’s been 10 years since she founded Claire’s Place Foundation. Till now it has raised over one million dollars to support families affected by Cystic Fibrosis and has a clear vision to continue to keep Claire’s legacy alive forever.

In 2019, a movie- Five feet Apart was also made, inspired by Claire’s life story. She was honoured with various awards including the Fox Teen Choice Award Honoree in 2015, and 17 Power Teens by seventeen magazines in 2016.

And, YouTube Originals also released a Claire documentary, directed by Oscar-winning filmmaker Nick Reed & Ryan Azevedo.

So, It’s the journey of a little girl who lived her life not longer but bigger, bigger enough to impact every human being on this planet facing unimaginable circumstances. The first step to peace is to let go of what you can not control. ‘But living a life that we are proud of, is something we can actually control’— Claire Wineland.

Know who you truly are and what you are capable of. Wanting something for your betterment of life and being healthy is different than wanting something to do something good out of your better life. This is what I’ve learned from her.

Rest In Peace Claire Wineland, you brave girl. You’ll be missed- ‘Forever’

Sources-

Do let us know about the Unsung heroes you know who are doing or did tremendous work for the betterment of society. We’ll be glad to do more research about them and will write a tribute dedicated to them.

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