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Beyond Breathing
Beyond Breathing is a story of a mother's loss of her 13 year old daughter, Jena, to Cystic Fibrosis, a fatal genetic disease. Her journey takes you from unfathomable heartache to love and understanding of life's realities. Through her journey she learns that life lessons come from her children and the beauty of living and the power of love. In the span of one year she learns to go from depression and dependency to inner strength and the realization that love never ends and that there are no coincidences. That she is beyond just breathing.
144 pages, Paperback
First published October 1, 2008
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About the author
Margarete Cassalina
5 books35 followers About Margarete
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.
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In her 2nd book, SEE YOU AT SUNSET, Margarete bridges you from her non-fiction life into the fictional world of her imagination while still adhering to her passion of bringing awareness to cystic fibrosis.
In her 3rd book, Embracing the Beauty in the Broken, is more of a conversation with a friend than a book. In thirty powerful, raw, and real chapters of conflict and resolution, Margarete shares compelling stories of loss and overcoming obstacles with authenticity and humor.
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
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.
" In her 2nd book, SEE YOU AT SUNSET, Margarete bridges you from her non-fiction life into the fictional world of her imagination while still adhering to her passion of bringing awareness to cystic fibrosis.
In her 3rd book, Embracing the Beauty in the Broken, is more of a conversation with a friend than a book. In thirty powerful, raw, and real chapters of conflict and resolution, Margarete shares compelling stories of loss and overcoming obstacles with authenticity and humor.
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
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Displaying 1 - 14 of 14 reviews
October 3, 2017
A beautiful memoir written by a CF mother. I work with CF patients and these types of memoirs can only make me a more compassionate, loving and empathetic nurse.
This story was full of emotion. I fell in love with Jena and her family💜
This story was full of emotion. I fell in love with Jena and her family💜
April 19, 2010
This is a remarkable story - once you meet this family you will hold them in your prayers forever.
February 20, 2012
For the first book I've read in over a year because we are battling our son's CF; I'm glad it was this one!
April 23, 2024
This non fiction book was written by my high school friend’s younger sister. It describes her life as a mother to 2 children with Cystic Fibrosis. While sometimes heartbreaking I believe it’s a picture of a strong mother and what she will do to try to make the world a better place. Margarete’s strength and resolve to help find a cure since 2009 has helped the scientists to come up with new treatments that help the majority of pts with CF to live a longer life. She was just a presenter with Glen Close at the 2024 Breakthrough Prize ceremony at the Academy of Motion Picture Arts and Sciences to reward 3 scientists that were instrumental in creating this breakthrough treatment for CF.
February 27, 2015
Margarete Cassalina shares her heart wrenching and captivating story about the loss of her 13 year old daughter, Jena to Cystic Fibrosis. This book is a very intimate and very real look into Margarete’s life and that of her family. I appreciated the honest description of her grief and of her coping mechanisms. She paints this story with a very raw and very honest brush. Margarete does a fantastic job of showing you exactly what her life was and is, all the ups and downs. She is a remarkable woman who has known devastating loss but has also found the healing power of faith, hope and love. I cried most of the way through the book but I am eternally grateful to Margarete for sharing Jena J with the world. That little girl has and will continue to be an inspiration to many!
October 19, 2010
I never would have run across this book if my brother hadn't loaned it to me -- he knows the author through work. It's the story of a mom's journey through her daughter's battle with cystic fibrosis and the mom's grief after her daughter's death. It's a very quick read (maybe 2-3 hours) and the writing is only so-so, but it is worth reading. It's a very touching story and I defy any mom to get through it without tissues. If you'd like to borrow it from me before I return it to my brother, just let me know.
September 10, 2010
Terribly sad memoir by a mother who lost her daughter to cystic fibrosis. Style of writing is somewhat amateur, and in the book she seemed to generally disregard her son, who also suffers from CF. It could be that the book was about her daughter and she wanted to limit that focus, though. I have no idea how anyone gets through the loss of a child. :(
January 15, 2013
This is a short read. I sat down on a Saturday afternoon and read the entire book. It is a very emotional story. The author did a good job explaining part of her journey as the mother of two children with Cystic Fibrosis. Parts of the book are quite heartwrenching.
September 15, 2010
An incredible book that I was honored to have read. It took guts for Margarete to share her story!
July 30, 2012
You r an amazing writer, an amazing woman, God bless u
June 14, 2016
Enjoyed this book very much. A straightforward read told from the heart.
March 17, 2019
To live with a life-threatening chronic illness is hard. But I will always maintain that watching the one I love most battle through it is harder.
Margarete takes us on a heart-wrenching journey no mother should ever have to endure. Her own worst nightmare, her own personal hell, spans the pages of this book, but she has a supernaturally impeccable way of telling it with grace, hope, strength, and pure determination to point the focus more toward love than loss. It‘s a journey from unthinkable heartbreak back to hope and a true testament to love truly being the cure for everything. It was a difficult read for me, as my husband and I both have the genetic illness that “moved Jena up” to Heaven and Margarete’s son, Eric, still fights today. But I found my life in the pages of this book, in the battles of both Margarete and Jena, and I will never be the same for it. It has taught me to look for love and life in even the most broken of circumstances, and it brought into more keen awareness that love is a gift from God Himself above and in that, it can never truly die.
Thank you, Margarete, for letting the world meet you and the precious daughter you still hold so dear. We are all better for it. We are all better for your kind of love.
Margarete takes us on a heart-wrenching journey no mother should ever have to endure. Her own worst nightmare, her own personal hell, spans the pages of this book, but she has a supernaturally impeccable way of telling it with grace, hope, strength, and pure determination to point the focus more toward love than loss. It‘s a journey from unthinkable heartbreak back to hope and a true testament to love truly being the cure for everything. It was a difficult read for me, as my husband and I both have the genetic illness that “moved Jena up” to Heaven and Margarete’s son, Eric, still fights today. But I found my life in the pages of this book, in the battles of both Margarete and Jena, and I will never be the same for it. It has taught me to look for love and life in even the most broken of circumstances, and it brought into more keen awareness that love is a gift from God Himself above and in that, it can never truly die.
Thank you, Margarete, for letting the world meet you and the precious daughter you still hold so dear. We are all better for it. We are all better for your kind of love.
March 30, 2019
Breathe.
I have so much respect and compassion for Margarete. Her words, her pain, her suffering, hit me hard.
Breathe.
This book follows Margarete and her life with raising two children, Eric and Jena with Cystic Fibrosis. She has devoted her life in raising her children, fighting for them to breathe daily and to also raise awareness for this incurable disease.
Breathe.
Jena.... oh my word. How to describe this incredible little lady! Her life, her determination, her words have completely inspired me.
Breathe.
The amount of effort Margarete, her family, her friends, her community have put into raising money for CF is just astounding.
Breathe.
This book is perfect for anyone who has suffered loss, is grieving, who has CF, knows someone with CF and anyone looking to be inspired.
Breathe.
“When you can see love, you can see me.”
I have so much respect and compassion for Margarete. Her words, her pain, her suffering, hit me hard.
Breathe.
This book follows Margarete and her life with raising two children, Eric and Jena with Cystic Fibrosis. She has devoted her life in raising her children, fighting for them to breathe daily and to also raise awareness for this incurable disease.
Breathe.
Jena.... oh my word. How to describe this incredible little lady! Her life, her determination, her words have completely inspired me.
Breathe.
The amount of effort Margarete, her family, her friends, her community have put into raising money for CF is just astounding.
Breathe.
This book is perfect for anyone who has suffered loss, is grieving, who has CF, knows someone with CF and anyone looking to be inspired.
Breathe.
“When you can see love, you can see me.”
May 10, 2025
so honored to read about Jena’s story and the life she lived in the time she had
Displaying 1 - 14 of 14 reviews