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Six years ago, our son, Phillip, arrived in this world, as seemingly "perfect" as any baby could be. We were elated to have him, as was his big brother, Alex, then 5 years old. Phillip had some difficulty nursing, but this was not worrisome until he was still not eating after 24 hours and began spitting up bile. X-rays showed an intestinal blockage.

At 36 hours old, instead of coming home to his newly decorated nursery, Phillip was undergoing surgery to clear the blockage and explore the damage.

We certainly didn´t feel very lucky, as we kissed our infant good-bye outside the operating room doors. And when we saw him again, sedated and covered with tubes and wires, we had a hard time feeling blessed.

But we were (and are) the fortunate ones. We did not have to go through months and even years of waiting, wondering what was wrong with our child. As soon as the surgeon discovered the blockage, consisting of thick, tar-like mucus (called meconium ileus), he suspected Cystic Fibrosis (CF). Even before the DNA test results were back from the lab, Phillip was being treated for CF and was out of the hospital in just 2 weeks.

Colorado is one of the few states which does a preliminary newborn screening for CF. Even if Phillip had not been born with meconium ileus, his condition would have been detected. Early diagnosis and treatment are critical. Many parents and children are not as lucky as we were.

Having a child with a chronic, life-threatening disease affects every part of one´s life. Needing time off for medical appointments affected our employment. The risk of exposure to too many germs at an early age made most daycare options impossible. Our finances were altered. Our entire family changed.

In his book, ALEX: The Life of a Child, Frank Deford writes, "Cystic fibrosis kills children, and painfully. How much worse could a thing be that kills children? But cystic fibrosis is worse. It can threaten the whole family in many ways, destroy the hearts and the faith of all its members."

These are the words of a father who has been there. Mr. Deford´s daughter, Alex, lost her battle to cystic fibrosis at the age of eight. That was almost 20 years ago, and, thankfully, many advances have been made since then. Still, the fact remains that there is no cure yet for this disease which affects 30,000 people in the United States, many of whom are children. And while the median age for survival for a person with CF has risen to 32 years, this does not ease the hearts of the many parents whose children still die at age 20, 16, or 8.

At 6 years of age, Phillip does not look, act or feel sick very often. This is the blessing of this type of disability. It is not always staring you in the face. And sometimes, for minutes or hours, you can even forget about it. Then you hear coughing or gagging; or you remember it´s time for a treatment; or you need to order more medicines; or talk on the phone to another insurance representative. And you remember again.

CF is a progressive disease. It may progress rapidly, slowly or moderately, but it always progresses. Someday, Phillip may look, act and feel sick. And his life could be one third as long as the average American boy´s born in 1996.

And yet we know we are so lucky to have competent, aggressive medical professionals, adequate health insurance, strong emotional support and the hope of a cure in Phillip´s lifetime.

At this point in his life, Phillip requires only 15 or so pills per day (these are enzymes to digest his food, which his body can´t do on its own), and 2 15-minute percussion treatments daily, which involve cupped-hand percussing on his body. (There is no proper description for this therapy. "Pounding" and "beating" sound like cause for a call to Social Services, and "patting" is too soothing-sounding to be accurate.) He also takes a few vitamins, which are no big deal to him, and does at least one breathing treatment per day, along with inhalers. Phillip recently developed asthma, which is a common complication of CF (as is Diabetes).

This is an example of very little maintenance of a CF patient. We are grateful for this gift, and would like to see others receive the same good fortune we´ve had, at this most difficult time in their lives.

We want other babies to have the same chance as Phillip has, to get the best possible care and the earliest diagnosis. We want other parents to get the same support we were able to find, and easily and quickly secure the latest information they need when their child's health is in danger. Every day of proper care is crucial in dealing with this devastating disease. Parents and pediatricians need to be educated about the many disguises CF wears.

The public needs to know and understand CF. Perhaps with the same recognition and attention as Cancer, AIDS, Depression, SIDS, ALS and numerous health conditions now observed with days, weeks and months in the United States, Cystic Fibrosis can become history. We are hopeful that some day, CF will take its place on the list of Treatable, Preventable and/or Curable Diseases, along with Typhoid, Polio and Diphtheria.

We must hope that this miraculous event happens before this disease takes its toll on our child. We implore you to help us keep this hope alive by proclaiming, establishing, and honoring National Cystic Fibrosis Awareness Week, October 13 - 19, 2002. And we thank you from the depths of our hearts for your concern, support and caring.

 

 

 


 

 

 

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