The recently published children's book, "Little Brave Ones" comes on the heels of many states across the nation adding the genetic test for CF to newborn screenings.
June 6, 2006 (Press Release) --
Cherokee, IA, June 5th, 2006- Children fighting the genetic killer Cystic Fibrosis are often kept apart so as not to share organisms which could be dangerous to other CF patients, and consequently they do not know any other children "like" them. My 4 year old with CF, Christa and her older brother Devin began to question recently why the daily barrage of respiratory treatments, medicines and routines at our house. "Why does she get to stay up later and do treatments?" was my son's innocent question one night at bedtime. Until that point it had almost always gone without saying that we began each morning and ended each evening spending sometimes more than an hour completing her daily regimen of respiratory therapy.
I began to think about all the time we devote every day to keeping her CF symptoms at bay. We strive to keep her airways clear and her digestive system functioning as well as possible. It's not an easy task, but as parents who love her dearly we make the choice to share this burden with her. It's something that she will have to keep up until science turns over a true cure.
With a little help from a number of online contacts I had made with other parents across the country also fighting CF at their homes, we compiled a photograph book titled "Little Brave Ones". The book was published in March and is beginning to pick up popularity with our little community of fighters. I hear over and over that the children love to see the photos of other kids who use the same type of equipment and engage in the same daily challenges as themselves. It's very rewarding as the author. The book is now available on Amazon.com by it's title.
I began to think about all the time we devote every day to keeping her CF symptoms at bay. We strive to keep her airways clear and her digestive system functioning as well as possible. It's not an easy task, but as parents who love her dearly we make the choice to share this burden with her. It's something that she will have to keep up until science turns over a true cure.
With a little help from a number of online contacts I had made with other parents across the country also fighting CF at their homes, we compiled a photograph book titled "Little Brave Ones". The book was published in March and is beginning to pick up popularity with our little community of fighters. I hear over and over that the children love to see the photos of other kids who use the same type of equipment and engage in the same daily challenges as themselves. It's very rewarding as the author. The book is now available on Amazon.com by it's title.
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