May 2011

Above & Beyond

Nicole and daughter, Capri, age 7, who has CF
Nicole and daughter, Capri, age 7,
who has CF.

It only took one phone call for Nicole Faulk to begin a top-to-bottom cleaning spree of her home in Oklahoma City and then put her house up for sale. It sold in just one day. Sight unseen, Nicole and her husband, Dustin, found a new home on Craigslist and without the promise of jobs, moved their family of five to Knoxville, Tenn. 

The Faulks left the life they knew on a life-saving mission to help find a cure and control for cystic fibrosis. 

Nicole’s daughter, Capri, 7, has CF and is one of about 3 to 4 percent of people with CF who have the G551D mutation. When Nicole first heard promising results from ongoing clinical trials of VX-770, a potential CF drug that is being tested in patients with the G551D mutation, she was elated.

VX-770, developed by Vertex Pharmaceuticals, Inc., is one of the first investigational drugs designed to treat the underlying cause of the disease.

After learning about the results of the VX-770 trial on the Cystic Fibrosis Foundation’s website, Nicole wrote and sent an email to Foundation President and CEO Robert J. Beall, Ph.D. “This news is amazing. I printed it off so people could read it. It was the weirdest feeling — holding a piece of paper with information about a medication that has the potential to save my child’s life. It was like I was holding a golden ticket — the ticket to my daughter’s future.” 

Nicole contacted Vertex to secure a spot for Capri in the clinical trial, knowing her family would likely have to relocate near a care center conducting the trial. Of the clinical trial sites, she and Dustin selected their top three choices. They crossed their fingers and waited.

It was early July 2009 when the Faulks found out they would move more than 800 miles away to Knoxville, Tenn. By August, they had a new address. 

Capri, a big-hearted and lively second grader who loves dogs, takes 40 pills and spends one hour a day on her vest and nebulizer treatments.

“When I first learned Capri had CF, a nurse told me all about the CF Foundation and all it does to help those with this disease,” Nicole recalls.  “The Foundation gives me hope that my daughter can look forward to a full life.”  

Capri is one of 30 children in the world participating in the clinical trial.

The Faulks’ decision to leave Oklahoma City wasn’t simple, transitioning not only Capri but her brother Cooper, 9, and sister Calli, 6, to a new school and leaving their extended family behind.

Last month, the CF Foundation announced positive results for the trial Capri is participating in. Despite all the challenges, the positive results of the trial make the family’s sacrifices much sweeter. “I am overjoyed by the good news from Vertex,” she says. “It gives me new hope that someday, CF will no longer be an issue and all children with CF can grow up and have families, look forward to college and be hopeful for their futures.”

Now back in Oklahoma, Nicole reports the family is thrilled to be home and Capri is thriving. During the 48 week trial, she gained 20 pounds, her lung function is better than it has been in a long time, and even her sweat is much less salty. “The dog always used to love to lick her and he doesn’t anymore,” Nicole laughs.

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