Emily Kramer-Golinkoff can’t get enough oxygen with each breath. This statement may seem like a simple fact, but for Emily, it is a constant struggle. Emily has advanced cystic fibrosis, a genetic disease that affects the lungs and other organs. This debilitating condition makes even simple tasks like walking or showering arduous and exhausting. But despite the challenges she faces, Emily remains a beacon of hope and inspiration for others.
Cystic fibrosis is a rare, life-threatening disease that affects about 30,000 people in the United States alone. It is caused by a mutation in the CFTR gene, which leads to the production of thick, sticky mucus that clogs the lungs and other organs. This mucus also traps bacteria, making it difficult for people with cystic fibrosis to fight off infections. As a result, the lungs become damaged over time, making it increasingly difficult to breathe.
For Emily, cystic fibrosis has been a part of her life since she was born. She was diagnosed with the disease at just three months old. Growing up, she faced numerous hospitalizations, surgeries, and treatments to manage her condition. But despite the constant challenges, Emily never let her disease define her. She was determined to live a full and meaningful life.
As she got older, Emily became more involved in raising awareness and funds for cystic fibrosis research. She co-founded Emily’s Entourage, a non-profit organization dedicated to accelerating research and drug development for the disease. Through her advocacy work, Emily has raised millions of dollars for cystic fibrosis research and has become a leading voice in the fight against this devastating disease.
But even with her tireless efforts, Emily’s health continued to decline. In 2013, she was placed on the lung transplant list, and in 2015, she received a life-saving double lung transplant. The surgery was a success, but it came with its own set of challenges. Emily had to relearn how to breathe and walk, and she faced the risk of organ rejection and infections. But she never gave up. She worked hard to regain her strength and independence, and she continues to thrive today.
Despite all that she has been through, Emily remains positive and determined to make a difference. She is a true inspiration to everyone who knows her. Her resilience, strength, and unwavering spirit have touched the lives of many and have given hope to those who are also battling cystic fibrosis.
Emily’s story is a reminder that even in the face of adversity, we have the power to overcome and make a difference. She has shown us that with determination, perseverance, and a positive attitude, anything is possible. Emily’s journey may not have been easy, but it has made her into the remarkable person she is today.
Through her advocacy work and her own personal journey, Emily has brought attention to cystic fibrosis and has helped to raise awareness and funds for research. Her efforts have led to significant advancements in treatment options and have given hope to those living with the disease. Emily’s Entourage continues to make a difference in the lives of those affected by cystic fibrosis, and Emily’s legacy will continue to inspire others for years to come.
Emily Kramer-Golinkoff may not be able to get enough oxygen with each breath, but she has breathed new life into the cystic fibrosis community. Her determination, courage, and unwavering spirit have made her a true hero. She has shown us that no matter what challenges we face, we can overcome them and make a positive impact in the world. Emily’s story is a testament to the power of the human spirit, and she will forever be an inspiration to us all.