“I think if there’s anything that anyone gets out of my story and what I’m trying to say is that you don’t have to get rid of the pain and the suffering in order to live lives that we’re really proud of. We don’t need to erase it. We need to find a way to actually make something of it and relate to it. And I think that applies to being sick and also applies to life in general for people.” – Claire Wineland
To say that our lives are blessed by the presence of angels is to believe in life after death, to believe in a higher power. Some of those angels are unseen, felt but unseen. And some of those angels are born into extraordinary lives. Claire Wineland is one of those angels.
She, like many of us, was born with a genetic lung disease called Cystic Fibrosis. She was told she was not going to live past the age of 5, then 10, then 15, then 20. As advances in the care and treatment of Cystic Fibrosis made it more feasible for her lungs to hold on, her life expectancy would move up the scale. At age 13, she was scheduled for a routine operation, one of many that us CF’ers have to endure, when she caught a blood infection that landed her in a medically induced coma and forced to be on an oscillator because the respirator failed for her. Only 1% of patients put on an oscillator ever make it out of one, and no one with cystic fibrosis had ever made it out prior to her.
Miraculously, Claire did. And when she came to, the road to recovery was paved with hard battles. The months it took for her to recover placed an unbelievable amount of stress on her family and her family’s finances. And although she had so much support from extended family and family friends, she realized that she had it good in comparison to the many. Would anyone with CF have the resources and help her family had seen during this time to help them? The answer was no. So she begged her mother and father to help her start Claire’s Place Foundation.
She got to work raising money for families of Cystic Fibrosis children that would spend days if not weeks in the hospital fighting infections that would never let up, not fully. Parents often have to quit their jobs because taking care of their children would take weeks if not months — like when things did not go well, as Claire’s family had experienced — in order for their children to survive what CF was doing to their tiny little bodies. They would face incredible personal losses because of these financial hardships and Claire set out to help those families. It was incredible forethought for someone who was just 13 years old at the time.
Claire’s Place Foundation today is one of the few foundations that focuses on patient’s family care and financial care for those thousands of those affected by Cystic Fibrosis. Most other foundations that exist today to help the patients themselves, but do not entirely focus on providing support to loved ones and care givers. Claire aimed to change that. But she did more than just that.
Claire became an advocate for all chronically ill patients, not just those with Cystic Fibrosis, in respect of what we were to people that looked at us with pity and sadness. She changed the narrative. She gave speeches about death and dying and the indignity that came with such a prospect. She encouraged, no demanded, that we embraced our struggles, our pain, our suffering and to be bold enough to still live a life full of happy moments, a heart filled with love, and a wondrous sense of adventure.
Claire vowed most of her life to never accept the gift of organ donation, yet she preached about the importance of it, should she get so sick that a double lung transplant would be the only way to extend her life. She had prepared for death, and at times seemed to welcome it. But never throughout her entire life did she feel sorry for herself. Never did she take a moment of her precious time to drown in self pity. On the contrary, she was FULL of life. And as her health declined and it became clear that her lungs would not hold on anymore, she changed her mind.
She decided to work with the team at The Lung Transplant Program at UC San Diego Health towards putting herself on the list for a double lung transplant. In her own words, “I didn’t realize how much I didn’t expect to live this long. I didn’t expect to have a chance. … The years of telling myself I can do it on my own are over.” So she was faced with the anguish of realizing that she had so much more to give but her lungs would not hold out to see that desire fulfilled. She got listed. And then she was promptly soon after taken off the list. In essence, she was too sick to even get a lung transplant.
But she didn’t give up. She was still in this fight, so with the aid of her feeding tube and a check in stay at the hospital she managed to get her weight back up to acceptable levels and she was relisted as priority 1. A few weeks later, she got the call. A donor had been found and on August 26th, she went back to the hospital to get new lungs. The 9-hour surgery went perfectly well, her new lungs were in and a gleeful team of family, friends, and medical staff were elated. But that happiness soon turned into despair as things took a turn for the worse.
Claire suffered a stroke from a blood clot that cut off blood supply to the right side of her brain. She had several emergency surgeries to try to relieve the pressure in her brain, and no one could know the extent of damage to her brain. We would not even know if she would be the same Claire who so desperately wanted to live longer, just to give to others.
With a heavy heart, and an advanced directive from Claire herself, when it became clear that she would not come out of this coma, her parents made the decision to let her go on September 3rd, 2018 at 6:00 PM PST. As Laura McHolm, the board chair for Claire’s foundation, wrote in a Facebook post, “They saw her into this world for her first breath and were with her for her last,” gifted with new lungs from a selfless donor that granted these amazing parents a long hard-fought look at their daughter breathing as normally as possible. Even if it was but for a short time. Claire Wineland passed away peacefully at 6:21 PM PST, surrounded by her parents and the love of MILLIONS of people.
And just like that Cystic Fibrosis would never be the same again, and just like that people with CF would never be the same again, and just like that, the world was forever a little bit dimmer. Our light, our hope, our voice…. sleeps now forever and free. And in her own words, so wise beyond her years,
“Go enjoy your life. Really. I mean that seriously, go enjoy it, ’cause there are people fighting like hell for it.” – Claire Wineland
We love you Claire and we will never forget you.
Photo Credit: Todd Westphal for Amy’s Smart Girls