Fighting for Breath

“Mommy, am I going to die?” It’s not a question any parent wants to consider. But Capri Faulk, age six, is asking. She looks healthy. She loves dogs, swimming, watching movies, playing with her two siblings and giving to others. But inside, her lungs are constantly filling with life-threatening mucus.

Before Capri was diagnosed with Cystic Fibrosis at 3-months-old, Dustin and Nicole Faulk were unaware they carried the gene for CF. An encounter with Respiratory Syncytial Virus led to Capri’s CF diagnosis. The respiratory therapist asked if Capri had been tested for CF. The nurse and physician both assured Capri did not have CF, but Nicole was not reassured.

“It was like God just told me she had it,” Nicole says. The Faulks insisted on testing and CF was confirmed.  They never saw the respiratory therapist again but credit him with saving Capri’s life. “If we hadn’t learned of her CF so early there are times we would have lost her,” Nicole explains. Thankfully, the other two Faulk children, Cooper, age eight, and Calli, age four, do not have CF.

The Cystic Fibrosis Foundation website describes CF as an inherited chronic disease that affects the lungs and digestive system. A defective gene causes the body to produce thick, sticky mucus that clogs the lungs and causes lung infections. CF also inhibits the body from breaking down and absorbing food.

Each day Capri has three breathing treatments and two treatments with a vest that shakes the mucus from her lungs. Her energy level is low, she dehydrates easily and is also suffering from an antibiotic-resistant bacteria.

In June, Capri qualified for a trial study of VX-770, an investigational oral drug aimed at treating the cause of CF. VX-770 is being developed and tested by Vertex Pharmaceuticals with support from the CF foundation. Testing is entering Phase III which means so far, the drug is showing great promise. In order for Capri to participate in the study for the next 12 months, the Faulks sold their Edmond home and moved to White Pine, Tennessee, where they don’t know anyone. Approximately 30 children with CF, age six to eleven, will participate in the two-part study.

Depending on the age of the patient, each day they may take special vitamins and enzyme supplements, perhaps two antibiotics and use a nebulizer and/or vest. “It can be a tremendous burden for the patient and the family but the reward is a longer, healthier life,” says James Royall, MD, Chief of Pulmonology at the OU College of Medicine.

Often, CF patients consider lung transplantation, but survival rates appear dismal. The CF Foundation website reports 90 percent of people with CF are alive one year after a lung transplant and just 50 percent are alive after five years. The new lungs are free of CF, but the body may reject the new lungs and the drugs used to fight off rejection make it more difficult to fight infections.

Chief of Lung Transplantation and Pulmonology at Integris Medical Center, Remiz Bag, MD, says survival also depends on the age of the patient. Typically CF patients are younger and after a lung transplant may not follow their regimen as strictly as an adult. “They feel well and stop the medication,” Bag says. 

“If we can work closely with the patient, family and caregivers there is a much better success rate.” 

Because there are only about 30,000 people in the United States diagnosed with CF, no federal funding has been available for research. “Parents started a foundation because they were tired of watching kids die,” says Nicole. “These children don’t look sick, but the stuff they go through every day is just so hard.”

The Faulks set a goal to raise $200,000 for CF research and have secured $22,000 so far. Fundraising continues as bake sales and spaghetti dinners are planned for the end of the year. In addition, 40 people are participating in “Fasting Fridays” through Capri’s Crusaders’ Facebook page. Through the end of the year, participants give up one meal each Friday, spend time in prayer or meditation, and donate the money saved from meals to the
CF Foundation.

“I know I can’t cure it, but I can raise awareness,” Nicole says. “Lack of knowledge costs lives.”

Find more information about cystic fibrosis at www.cff.org. To assist the Faulks with fundraising, visit Nicole’s blog at http://capriscrusaders.blogspot.com

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