Three 'rare' children visit Luke as pilots for day Published Nov. 20, 2008 By Airman 1st Class C.J. Hatch Thunderbolt staff writer LUKE AIR FORCE BASE, Ariz. -- Sometimes life can be hard and sometimes it can be easy, but imagine how would it be to live life by the hands of a clock. For three children who visited Luke Air Force Base recently, as part of a pilot for a day tour, life is just that way. Brittney "Crafty" Carroll, 14, and brothers, Robert "Indy," 10 and Samual "Striker," 9, have a rare disorder known as cystinosis which has them on a very precise schedule of medication and other treatments. "All three take medication every six hours to help control their symptoms," Mildred Carroll, the children's grandmother said. "Then there's nightly dialysis for Robert and monthly visits to Phoenix Children's Hospital for all three." There are approximately 2,000 known individuals with cystinosis in the world. Cystinosis is an inherited disorder in which the amino acid cystine is not transported properly out of the body's cells forming crystal-like deposits in the cells which can cause tissue and organ damage throughout the body. Some of the side effects of the disorder are stunted growth and kidney problems. The three siblings, along with their sister Calianne and grandmother were treated to an individualized base tour by the 56th Operations Support Squadron. Their first order of business for the day was to change into flight suits complete with squadron patches and name tags with their call signs. "I look slick," Samual said about his flight suit and new haircut he received the day before. The children met with Lt. Col. Matthew Willis, 56th OSS commander, who gave them a personal tour of the squadron. "We saw where the people watch the weather," Robert said, after the squadron tour. "Then we got to go see the planes take off." The children's next stop was the air traffic control tower where they took a stroll on the catwalk to look over the base and watched as three F-16 Fighting Falcons launched. "The catwalk was a little scary because I don't like heights," Brittney said, when she returned to the safety of the ground floor. "I stayed on the wall the whole time but what I saw was cool." Safely back on the ground, the family then traveled to the wing headquarters for a meeting with Col. Hank Reed, 56th Fighter Wing vice commander. Each received a wing coin and learned a brief history of coins and how to get free root beer by checking to see if others are carrying their coins. The tradition being that the person who doesn't show a coin buys the drinks. "Do you have your coin?" the children asked everyone they met after receiving theirs. Before returning to the OSS for a final farewell, the children took a ride in the simulator. "It is so cool to see all the jets," Samual said. "I hope I can come back for the air show." Besides seeing the jets, the children agreed the best part of the day was playing the "giant video game," referring to the simulator.