Cystic Fibrosis Crusader

Jackie Harper has fought a long and valiant battle most will never wage and doesn’t complain or say ‘why me.’ Instead, the 15-year-old savors every moment as a precious commodity.

 

That’s because she has cystic fibrosis, the life-threatening genetic disease that causes thick, sticky mucus to accumulate in her lungs and digestive system.  

 

“Different people have different degrees of the illness,” says her father, Pat Fitzgerald.  “Unfortunately for Jacqueline, she has it about as bad as you can get it, plus they misdiagnosed it at birth, so her lungs were damaged fairly severely in the first years of her life and she’s been pretty much in trouble ever since.”

 

According to the Cystic Fibrosis Foundation, about 30,000 people in the United States are afflicted and ten million more (one in every 31 Americans) are carriers of the defective CF gene, but do not have the disease. It is most common in Caucasians of Northern European descent, but can affect all races. Diagnosis usually occurs before the age of two.  

 

Symptoms include salty sweat, persistent coughing, frequent chest and sinus infections with recurrent pneumonia or bronchitis, wheezing or shortness of breath, delayed growth, and poor weight gain. 

 

Advances in medicine have helped extend life expectancies and research science is tirelessly working towards a cure.

 

Harper’s lung functioning is now below 20 percent and she recently weathered another hurdle in the approval process for a lung transplant at Children’s Hospital Los Angeles. Mark Pian, MD, director of pediatric pulmonology at Rady Children’s Hospital San Diego, is her primary doctor. 

 

Her father is always by her side. “I would not be here if it wasn’t for him; I love him very much,” Harper says.

 

Seventeen-year-old brother Kelly is her protector and she likes playing video games and watching scary movies with her twin brother, John, who is continually there to help. Friends have been a constant source of support as well. 

 

Though she misses being actively involved in sports, including jet skiing, four wheeling, and rock climbing, once a week Harper still gets to enjoy another passion — horseback riding at REINS (Riding Emphasizing Individual Needs and Strengths) Therapeutic Horsemanship Program in Fallbrook.

 

The experience of having CF has inspired her to write a book and share an intimate perspective on the disease so other kids won’t be frightened if they have to go to the hospital.

 

Harper cites the (gut wrenching) coughing she does every morning as the most difficult part of the disease, but also sees the positive.

 

“It made me think that there is a good side to everything,” she says, “and that you can’t always dwell on the bad things in your life or you would be miserable. I just keep my sport going and that helps me handle everything.” (www.jackiesworld.org)   JILLIAN RISBERG