Cystic Fibrosis

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

  • clogs the lungs and leads to life-threatening lung infections; and
  • obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

Angela Morrison has written a great young adult novel that portrays a boy who desperately tries to escape jail (hospitalization and medical treatments) in pursuit of being normal:               SING ME TO SLEEP. She has done her research well and presents this haunting narrative with professional expertise. I highly recommend it for anyone with CF, or acquainted with someone with CF.

Another issue that is handled quite well in this book is bullying, and poor-self esteem. The story also shows the strength and power of love, and healing effects of music.

Why I Wrote Save the Child

(Power Point Presentation) Why I wrote Save The Child

Links to related articles:

LSU Law Center’s Medical and Public Health Law Site Statement on Parental Rights

Parents of Parker Jensen Challenge Utah Supreme Court for Family Rights.

CNN Health News article on Parents Rights to Chose Medical Care (Danny Hauser)