Why Five Feet Apart Is Dedicated To Claire Wineland

Photo: Jesse Grant/Getty Images.
Stella (Haley Lu Richardson) and Will (Cole Sprouse), the tortured lovers in Five Feet Apart, can't come within six feet of one another. Both Stella and Will have cystic fibrosis, a genetically inherited disease that especially affects the lungs and impacts a person's ability to breathe over time. CF causes an excessive buildup of mucus in the body's organs, often resulting in death.
By coming in close proximity, Stella and Will risk infecting each other with possibly fatal bacteria. For two teenagers lovers in love, these restrictions pose quite a conundrum.
While Five Feet Apart isn't exactly based on a true story, the movie was inspired by the experiences of those who have this very real disease, which affects 30,000 people in the United States and 70,000 worldwide. In fact, Five Feet Apart could not have been made without the support of Claire Wineland, an extraordinary young woman and CF patient known for her candid videos about life with the disease. The movie is dedicated to Wineland.
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Like the character Stella, who constantly has her camera in hand, Wineland documented her experience with CF in a series of endearing and bravely honest YouTube videos. As a 14-year-old, Wineland started broadcasting videos under the Facebook page "The Clairity Project." She wanted to speak frankly about living with a terminal illness — especially since she didn't see that discussion happening elsewhere.
"As I grew up with CF, I started to realize that the way in which sick people are actually represented, and talked about in society...is degrading. People don't see them as full, complex beings with wide ranges of emotions, life experience and valid things to share with the world," Wineland told Jeff Ayers in the blog Death Wish Coffee in April 2018.
The videos, she explained, were a response to the vacuum of real conversation around illness. "I thought, 'Hey, maybe that's a good place for me to kinda try and humanize people who are sick, and to make them more three-dimensional, and talk about the things that don't normally get talked about," Wineland said.
In her videos, Wineland addressed death with a smile. She explained the mechanics of oxygen tubes. She doled out tips for speaking to a sick person.
When she was 17, due to conflicts with the Clairity Project, Wineland went solo and started her own YouTube channel. With over 300,000 subscribe, Wineland became a public figure in the YouTubing world, as well as one in the CF community.
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In addition to being a public face of CF, Wineland was also a philanthropist. Wineland and her family started Claire's Place Foundation, an advocacy group that offers financial and emotional support to children and young adults with CF, after she survived the harrowing experience of lung failure at the age of 13.
Wineland was an essential part of the making of Five Feet Apart. Wineland met the movie's director, Jane the Virgin star Justin Baldoni, while they were collaborating on a TV series called My Last Days. In fact, the movie's central problem stemmed from a conversation Baldoni and Wineland had about dating with CF.
"I asked her, 'Alright, give me the inside scoop, what happens in these hospitals? What happens when you're 16 and have CF? Have you ever dated someone else with CF?'" Baldoni told Bustle. "And she was the one that told me that that is so bad and looked down on and dangerous, because there's something called cross-infection, and that's why people with CF can't be closer than six feet because they can contaminate each other with their unique bacteria." Hence, Stella and Will's problem.
To ensure Five Feet Apart depicted the CF experience accurately, Wineland was brought on as a consultant. According to a post on the Claire's Place Foundation Instagram, Claire worked with Richardson and Sprouse in perfecting their coughs, and helped decorate Stella's hospital room. Claire and Stella had similar chakra posters hanging in their rooms. Wineland also used her intimate knowledge of the disease to storyboard and brainstorm ideas with Baldoni and the movie's writers, Tobias Iaconis and Mikki Daughtry.
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Tragically, Wineland won't get to see the project of which she was such an essential part. Wineland died in September 2018 at the age of 21 following complications from a double lung transplant. Wineland had a massive stroke after the surgery. “She [Claire] was not in any pain and the medical staff said it was the most peaceful passing they had ever witnessed,” Claire’s foundation, Claire’s Place, confirmed via Facebook.
Following her death, Baldoni posted a heartfelt dedication to Wineland on Instagram. "Anything was possible to Claire, she didn’t just talk it…she lived it. She was a teacher in every sense of the word and I can only imagine that the reason she outlived the doctors expectations every year of her life was because she had so much left to teach," Baldoni wrote.
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“Death is Inevitable. Living a life we can be proud of is something we can control.” - Claire Wineland. Last night at 6 pm- my dear friend and little soul sister -Claire took her last breath on earth in the exact way she wanted. Surrounded by love and in complete peace while in the arms of her incredible parents Melissa and John. The medical staff said it was the most peaceful passing they had ever witnessed. Saturday night- we got the text from Claires mom that that it was time to come and say goodbye. I was devastated. But when we got to the ICU in San Diego I witnessed what I can only describe as one of the purest demonstrations of love I had ever seen. I saw pain yes, but I also saw joy. I saw support, love, laughter, and a group of people brought together by a young woman who had the keys to the secrets of the universe. It was exactly as I can imagine Claire wanting it. She even made a list of who could come say goodbye if she passed. Getting the chance to sit with her alone in that sacred space, hold her hand, pray for her, and thank her for more than I could ever write or put into words will forever be one of the the greatest honors of my life. And while my heart is broken and my tears fill this keyboard, this news is in no way tragic, as Claire wouldn’t have wanted her end to be a “tragic tale” but instead a hopeful joy-filled story that isnt over. Her legacy is just beginning as she wanted all of us to know that your circumstances do not define you, your happiness or your ability to influence the world. Anything was possible to Claire, she she didn’t just talk it… she lived it. She was a teacher in every sense of the word and I can only imagine that the reason she outlived the doctors expectations every year of her life was because she had so much left to teach. Claire told me many times how bad she wanted her foundation to live on and flourish after she was gone. So in lieu of flowers, the family is asking for donations to be made to Claire’s foundation. The link is in my bio to donate to the foundation. It would meant the world to me if you would consider It. Thank you all- say a prayer for her beautiful soul today. Love Justin

A post shared by Justin Baldoni (@justinbaldoni) on

Baldoni noted that Wineland's legacy will outlive her. "While my heart is broken and my tears fill this keyboard, this news is in no way tragic, as Claire wouldn’t have wanted her end to be a 'tragic tale' but instead a hopeful joy-filled story that isnt over. Her legacy is just beginning as she wanted all of us to know that your circumstances do not define you, your happiness or your ability to influence the world," Baldoni wrote.
Five Feet Apart, out March 15, is a manifestation of her legacy.
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