Margarete Cassalina lives in Milton, NY and is the mother of two children born with Cystic Fibrosis (CF). She grew up living throughout New York, Florida, and Germany. In 1991, Margarete was 22 when her son, Eric, was diagnosed with CF. Less than two years later, she gave birth to her daughter, Jena, who was diagnosed with CF at one month of age. While Eric had few CF complications throughout his childhood, Jena’s case was more severe. By age 4 months, she had double pneumonia, and she continued to have numerous lung infections. Margarete, and her husband Marc, made sure that their children had the best quality of life they could provide, making each moment count.
In 2006, Jena’s lung function had declined to 19 percent of normal and on December 4, 2006 Jena passed away from CF at the age of 13, while waiting for a double lung transplant. In the year following Jena’s lost battle, Margarete went from depression to a balance built on her inner strength, the realization that love never ends and that there are no coincidences. Margarete thought that Jena’s death would force her to shut herself off to the world, but she found that it has only strengthened her will to help find a cure for CF. She now knows that sometimes the most important thing you can do is to just be there and that breathing isn’t always easy.
Margarete wrote Beyond Breathing as a means of coping with the loss of her daughter and sharing her daughter’s amazing strength and love of life with the world. The book was published in March of 2009 by iUniverse and has since received the Editor’s Choice Award, Reader’s Choice Award, and the Star Award.
Margarete and her husband Marc are extremely active at a national level with The Cystic Fibrosis Foundation. They have served as National Public Advocacy Chairs, National Volunteer Leadership Chairs, and are National Leadership Council Members. They and are committed in creating awareness and raising funds for scientific research. Margarete and Marc have dedicated their lives to finding the ultimate cure so that one day CF will stand for “Cure Found”. Together, Margarete and Marc raise thousands of dollars each year for the Cystic Fibrosis Foundation. Margarete is a frequent speaker at CF fundraisers and events across the country. 65% of the net proceeds from the sale of Beyond Breathing go directly back to The Cystic Fibrosis Foundation to fund research.
In Her Own Words
|Click play to hear Margarete talk about being a mother to children with Cystic Fibrosis. Audio from a New York Times interview published December 16, 2010.