Sunday, July 13, 2014
Ever since his younger brother, Preston, 2, was diagnosed with Cystic Fibrosis at 7 weeks old, Colin Straight, 14, has wanted to make a difference.
Colin has set out to make a difference by making his voice heard in the battle against the genetic disease that causes the body to produce thick mucus that clogs the lungs, obstructs the pancreas and prohibits natural enzymes from helping the body digest and absorb food.
He travelled to Washington, D.C., on June 26 for the 2014 Cystic Fibrosis Teen Advocacy Day, along with his mother, Renee Straight.
Through this visit, Colin was able to meet face-to-face with several representatives for senators and congressmen. He discussed the personal struggles of having someone he loves be afflicted with CF and also talk to them about the importance of finding a cure.
“It was an honor to meet with them,” Colin said. “I am glad I can help by spreading awareness and I felt like they were really listening to me.”
Meeting with representatives from the offices of South Carolina senators, including Tim Scott and Lindsey Graham.
Also, he met with Rep. Trey Gowdy, Rep. Jeff Duncan, Rep. Tom Rice and Rep. Mick Mulvaney. While most of these visits were with their office representatives, he was able to meet Rep. Mark Sanford and talk to him directly about his cause.
“It was a bittersweet moment watching him rise to the occasion,” Renee Straight said. “Seeing him walk the halls of Congress and tell his CF story was amazing.”
While she knew Colin was nervous, she knew his message was strong and that he is strong-willed and determined enough to make his voice heard loud and clear.
“The whole thing was a great experience to show him that he has a voice,” Renee Straight said. “He is a future voter. He was listened to. He wasn’t pushed out of the office. The ones that listened were really engaged in the message that he was giving.”
Currently, Preston is doing great, according to his family. Besides his treatments and medications he is just like any other fun loving 2 year old. The Straight family raises funds for the Cystic Fibrosis Foundation through their team of friends or family, “Preston’s Perseverance”. To date in 2014 raising $15,000 towards a cure for Cystic Fibrosis.
“We are really hopeful,” Renee Straight said. “We’re trying to keep Preston as healthy as possible, because we are confident that, in a couple of years, there will be a drug that controls this illness.”
Renee points out that advancements in medications like Kalydeco, which has been able to work at a cellular level for 4 percent of the population and was FDA-approved in January 2012, have been able to push the ability to find a cure further.
“There is a lot of really great new science that is becoming available for kids like Preston in the next few years,” Renee Straight said. “We see the finish line, so we feel that it is really important now that these kids were up on Capitol Hill fighting this cause. These are some really amazing things that are being done.”
“It’s important because they’re really close to finding a medicine that works,” Colin said. “The more people that are aware of this, the closer we get to finding a cure for Preston.”
For more information on Cystic Fibrosis and the Cystic Fibrosis Foundation, visit www.cff.org.