Published Monday, June 22, 2009
Family raising awareness about cystic fibrosis
The Newnan Times-Herald
As 10-month-old Colin DePriest catches a cat nap in his car seat, he looks the picture of health.
However, the Newnan baby was one of 15 Georgia children diagnosed with cystic fibrosis in 2008 through newborn screenings.
Samantha and Chris DePriest thought their third born son was completely healthy until they received a call from the pediatrician's office five weeks after delivery.
Colin had tested positive for cystic fibrosis (CF), but a second test came back negative. "It was a roller coaster," said Samantha DePriest.
Then a sweat test, which determines salt content, came back borderline. Sodium levels in sweat are elevated in CF patients.
The family then waited three months for the result of a genetic test with the definitive diagnosis coming in January 2009. It was then the DePriests realized, "we've got to take ownership of this," said Samantha.
During February-April of this year, young Colin began losing weight. He now takes digestive enzymes prior to eating. He eats regular foods puréed, instead of baby food as he needs the calories.
Colin currently has a cough, which is being monitored. One of the symptoms of CF is a thick mucus in the lungs that accumulates -- making the patients susceptible to infections.
In addition to a chronic cough, and weight loss, other symptoms can include fatigue, dehydration and sinusitis.
In the 1950s, someone born with CF had an average life span of just one year. Now, thanks to awareness and medical research, the life span is more than 37 years.
But the DePriests are trying to not look too far into the future and focus on Colin's health for that day.
Colin sometimes wears a special vest that connects to a machine to send rhythmic beats of air to the chest. The bursts of air help break up the sticky mucus in the lungs. DePriest says the vest and machine cost $20,000 with insurance paying half.
Colin's older brothers know he needs to eat healthy foods, to get rest, and that having CF means "people love you."
Although CF is an inherited disease, the DePriests went back as far as possible and could find no known cases in their family histories.
The DePriests formed Team Colin and in April held a "fun raiser" that collected $5,000. They have met other CF families, learning that there are 11 Coweta children who are living with the disease.
Samantha DePriest has organized a Spirit Night tonight to benefit the Georgia Chapter of the Cystic Fibrosis Foundation. The event will be held from 5-9 p.m. at the Newnan Chick-fil-A Dwarf House on Bullsboro Drive.
For those who mention the Cystic Fibrosis Foundation when ordering, a portion of the order will go to the foundation and its clinics.
Sha-Sha the Clown will be on hand to visit with children, and there will be raffle drawings for spa and golf packages, and new toys.
The evening has also turned into a way to honor the late Thomas Broadwater, a Northgate High School student who recently lost his battle with cystic fibrosis.
It is DePriest's understanding that Broadwater was always very willing to participate in clinical trials, and believes that his participation benefited younger patients such as Colin.
DePriest also encourages local residents to learn more about the CF Foundation's campaign "Make Every Breath Count." The program's goal is to help constituents communicate with legislators during summer recess about issues important to CF patients.
This year, the foundation is advocating loosening of restrictions on who may participate in clinical drug trials.
For more information on the work of the CF Foundation, visit online at www.cff.org .
