Last September marked the third death anniversary of Claire Wineland, an exceptional soul who dedicated her whole life to uplifting individuals who are suffering from cystic fibrosis like herself. Therefore, this article serves as a commemoration so that we would always remember her lasting impact on the world.
What is Cystic Fibrosis?
Cystic fibrosis (CF) is a rare, hereditary, and life-threatening disease that harms the lungs and multiple organs in the digestive system. A child has an increased risk of having CF when both parents are carriers of the defective gene.
Mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) cause the CFTR protein to be defective which means that chloride would not be transported in and out of cells by the CFTR protein. The chloride’s purpose is to maintain the balance of the intracellular and extracellular water. Therefore, being trapped in cells, chloride would be unable to attract the water to the surface of the cells. The absence of the necessary fluids would then result in the secretion of dehydrated, thick, and sticky mucus.
Due to its abnormal and unfavorable consistency, the mucus would obstruct the airways, heightening the possibilities of lung infections and respiratory failure. This accumulation of mucus would also continuously inhibit the individual’s ability to breathe easily. Additionally, CF affects the liver as the mucus would clog the bile duct which may result in liver disease. Furthermore, the build-up of thick mucus in the pancreas would hinder the discharge of digestive enzymes essential for nutrient absorption. With this, the individual may become thin and malnourished.
Claire’s Life and Work
On April 10, 1997, Claire Lucia Wineland was born and diagnosed with CF in Austin, Texas. This was definitely devastating news to her family members and relatives because the expected life expectancy of a person with CF was only 10 years old and most failed to reach adulthood.
A day following her 13th birthday, a routine surgery was scheduled in order to remedy her severe gastric reflux. During the procedure, Claire’s oxygen saturation declined quickly and she had bacterial blood poisoning called septicemia. This caused her lungs to collapse which ultimately led to full lung failure. The doctors estimated that she would have an extremely slim chance of survival (1% to be exact!) as Claire was in a medically induced coma and had to be placed on an oscillator. Fortunately, Claire defied all odds and emerged from the coma after 16 days! She witnessed how all of her loved ones poured out their love and support to her when she woke up. She felt an immense amount of gratitude for her support system which sparked her desire to create the Claire’s Place Foundation, an organization that aims to provide emotional and financial support to children with CF as well as their families.
The Claire’s Place Foundation has touched countless lives with its various extraordinary projects. Firstly, the extended hospital stay grants are intended to relieve the parents’ financial burdens like hospital bills, food and housing expenses, transportation costs (from house to hospital and vice versa), etc. Through such, the families would focus all of their thoughts and energies towards the condition and recovery of their children. Secondly, the organization offers opportunities for families to be connected with each other through the Standing Families Network. This helps families to find comfort amidst the troubles brought by CF and to receive emotional support and guidance from others who have similar plights. Thirdly, the members of the charity wish to continue Claire’s amazing project which is planning the designs of hospital playrooms. Since pediatric patients stay in the hospital for a long period of time, Claire wanted to create a space for them to have access to numerous child-friendly entertainment options like toys, games, and activities.
“I know my life will be shorter so every day has meaning.”
Claire will always be an inspiration to all. She did not let her illness get in her way of fulfilling her visions and achieving great things. She was aware that she would succumb to CF one day; therefore, she was motivated to maximize her time to advocate for others with CF and to teach people how to live their life to the fullest without any fear. Thus, Claire started her own YouTube channel where she courageously posted honest videos that depicted her hospital stays, updated the viewers of her current condition, and shared her thoughts and advice. From a young age, she was very comfortable being in front of the camera and radiating positivity everywhere she went, so it is not surprising that she would utilize this platform to motivate others with chronic illnesses!
In June 2018, Claire received the most-awaited call which was that she would be a receiver of two lungs through transplant surgery! However, on September 2, 2018, she had a stroke which was caused by a blood clot that blocked the blood flow to the right side of her brain. This complication unfortunately led to her passing. Her last words were “Death is inevitable. Living a life you are proud of is something you can control.”
Despite spending a quarter of her life in the hospital, relying on a feeding tube to absorb nutrients, and requiring a nebulizer to loosen the persistent mucus, Claire Wineland remained vibrant and even encouraged others to change their perspectives about their illnesses. She emphasized that an illness must not take away one’s power to live a happy and fulfilling life that he/she would be proud of at the end of time. This is essential to keep in mind especially since society has an erroneous notion that sick people have miserable lives and as a result, need pity from others. Even after her passing, Claire still continues to empower those who have chronic illnesses to enjoy and appreciate every moment whilst providing meaningful contributions to the community.
I hope you are inspired by Claire!