When confronted with a progressive, life-threatening illness, some would wallow in self-pity and ask Why me! But not Claire Wineland, a Los Angeles teen stricken with cystic fibrosis (CF). She notes, “I believe in making the best of what life gives you.” In addition to be born with a serious genetic disorder, life hit her with a doozy of a challenge in 2010. Following a surgical procedure to correct a complication due to CF, she fell into a septic coma and ended up on full life support for 16 days with only a 1% chance of survival. However, she not only survived the ordeal but also refocused her goals in life. She has dedicated her life to being of service to others living with cystic fibrosis by founding Claire’s Place Foundation.
With her co-author, Chynna Bracha Levin, Claire vividly describes with precision, honesty, and a remarkable sense of humor just what it’s like to live with an illness that is so often fatal. Like most CF victims, Clair has logged many hours in the hospital. She explains that “the hospital feels like a second home to me.” Although some terrifying events are indelibly etched into her brain, she also reflects on pleasant moments there such as doing projects with the nurses, having New Year’s Eve parties in her room, and spending time with the food service cooking in the kitchen. Those experiences have balanced out her coma and its aftermath, when she was placed on an oscillator, which is a high-powered ventilator. She explains that she is the first CF patient to survive after a stint on the oscillator.
Claire has accomplished much in her 15 years. How many teens her age have become a serious advocate and conducted speaking engagements as well as founding a foundation? “Every Breath I Take” is a must-read for anyone who feels compassion for a child, a relative, or friend going through an intense or even life-threatening illness. All the proceeds from the book will be donated to the “Claire’s Place Foundation.” The foundation offers CF patients dream trip assistance and/or extended ICU stays financial assistance for weeks-long and sometimes months-long hospital visits.
CF is an inherited disease that causes thick, sticky mucus to build up in the lungs and digestive tract. It is one of the most common chronic lung diseases in children and young adults, and may result in early death. It is caused by a defective gene which causes the body to produce abnormally thick and sticky fluid, called mucus. This mucus builds up in the breathing passages of the lungs and in the pancreas, the organ that helps to break down and absorb food. This collection of sticky mucus results in life-threatening lung infections and serious digestion problems. Millions of Americans carry the defective CF gene, but do not have any symptoms. That’s because a person with CF must inherit two defective CF genes: one from each parent. An estimated 1 in 29 Caucasian Americans have the CF gene. The disease is the most common, deadly, inherited disorder affecting Caucasians in the United States. It is more common among those of Northern or Central European descent. Most children with CF are diagnosed by age 2. A small number, however, are not diagnosed until age 18 or older. These patients usually have a milder form of the disease.
The book is available at this link.
For more information about Claire’s Place Foundation, click on this link
For more information about CF, click on this link.