7. Gunnar Esiason
Gunnar Esiason is the son of former football player and star Boomer Esiason. Gunnar, who is now 24-years-old, was diagnosed at birth with cystic fibrosis. Regardless of the disease, he grew up surrounded by sports, practicing football, lacrosse, ice hockey, golf and more. Gunnar’s parents, Boomer and Cheryl, decided not only to focus on helping their son but also on helping others fight the disease. With this hope, the family created the Boomer Esiason Foundation (BEF), which funds research and supports the CF community.
“Because of BEF, I have been able to reach out to the CF community and try to reassure everyone who has been affected by this disease that CF isn’t the end of the world, if they don’t want it to be. That has been my main goal,” said Gunnar, who is currently studying at Boston College. “I want to try and have the most ‘normal’ college experience possible. I hope to graduate on time, and then potentially move on to post-graduate studies.” Given the improvements in life expectancy for patients with cystic fibrosis, all the family is optimistic. “I believe that we are experiencing something of a medical miracle now in cystic fibrosis research,” added Boomer Esiason. “I fully expect Gunnar to outlive me.”
8. Celine Dion’s niece Karine
Karine was the daughter of Liette and niece of Celine Dion, who died as a result of cystic fibrosis in 1993 when she was 16-years-old. She was diagnosed at birth with the disease and struggled through her childhood with it. Having witnessed the devastation of the disease in her family, Celine Dion became devoted to the fight against CF and she is currently the President of Honor of the Foundation against Cystic Fibrosis, she also supports the T.J. Martell Foundation and the Bottom Memorial of Princess Diana of Galls.
“I went near her,” told Céline. “She had slept so she had the strength to get up and I was behind her to trying to support her little body with my back because she was bent. She got up and she took my arm under her, I loosened her hair and I sang in her ear, and like that, the idea of Eddy’s song came to me: Les Oiseaux du Bonheur; I sang this song very quietly and quite slowly, I felt that her organs, one after the other, left us, because my body was very near to hers and I felt that they left us. I signed to my family who was on the edge, and for my mother (she shakes the head), while singing, everybody knew. Then I looked at my family and I continued to sing, she left slowly like that. I am so satisfied that I sang her a song before she left, and before she gave me this luck to accompany her, it is the most beautiful gift… ”
9. Laura Rothenberg
Laura Rothenberg was a student at Brown University and a patient with cystic fibrosis. What made her famous was a book she wrote titled “Breathing for a Living: A Memoir,” as well as a radio documentary called “My So-Called Lungs,” which aired on NPR August 5, 2002. Born in 1981, Laura was aware that she would die young, but she tried to have as normal a life as possible and she believed people did not see her as sick. She underwent a double lung transplant, but a year and a half later, the new lungs started to fail. Laura died in 2003 aged 21-years-old.
“I definitely think about after I’m gone. When I was younger, I used to try and plan my funeral, where I’d want it, how many people I’d want to be there, what it would be like. I’ve always been scared that people would forget about me. Eight years go by and, you know, someone who dies isn’t the first person you think of when you wake up necessarily. But I’ll find a way so that people won’t forget about me. You know, I’ll give friends things of mine that they’ll always have,” Laura Rothenberg wrote in one of the many audio diary entries she recorded over two years.
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