Cherokee, IA, June 07, 2006 --(PR.com
)-- 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 and often feel a bit isolated by their disease. Christa Lux, a 4 year old with CF, and her healthy older brother Devin, began to question recently why the daily barrage of respiratory treatments, medicines and routines at their house. "Why does she get to stay up later and do treatments?" was the innocent question posed one night at bedtime. Until that point it had always gone without saying in the home that each morning began and each evening ended with sometimes more than an hour completing Christa's daily regimen of respiratory therapy. It had been that way since Christa's birth.
Their mother, Carrie began to think about all the time devoted every day to keeping these life threatening CF symptoms at bay. All CF patients strive to keep their airways clear and their 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," remarks Carrie. "It's something that Christa will have to keep up until science turns over a true cure," she adds.
With a little help from a number of online contacts Carrie had made with other parents across the country also fighting CF at their homes, a photograph book titled "Little Brave Ones" was written, based around a day in Christa's life and introducing numerous others with cystic fibrosis taking part in their daily treatments. The book was published in March and is beginning to pick up popularity with this little community of fighters.
"Little Brave Ones" is published on the heels of the genetic test for cystic fibrosis becoming a part of routine newborn screenings in many various states across the nation. Until recently in these states, CF was many times misdiagnosed or left untreated for sometimes years. Early diagnosis can often lead to a better prognosis. Preventative measures can be taken even early in life.
"I hear so many times that these special 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," comments Lux.
The book is now available on Amazon.com by its title.