Living Life to the Fullest with a Life-threatening Disorder

Living Life to the Fullest with a Life-threatening Disorder
This article was published in Dayton Daily News on April 29, 2015

By Susan Gnann

Somehow 16-year old Macy Gehle of Celina “makes it easy” for her family to cope with her cystic fibrosis. Diagnosed shorty after her birth, Macy’s strong will and determination in dealing with this progressive disease has enabled her parents Carrie and Joe Gehle and her sister Brooke to accept that no matter the obstacle, their daughter and sister will handle it with grace and with a smile on her face.

Cystic fibrosis (CF) is a genetic disorder typically diagnosed shorty after a child is born. Many believe it is only a lung disorder, but it goes well beyond the pulmonary system. CF also damages the digestive system by attacking the protective mucous and digestive juices of both systems. Instead of lubricating, these fluids thicken and interfere with normal function of the lungs and organs in the digestive system causing a multitude of symptoms. Daily care and treatment is necessary to maintain quality of life. It is a progressive disease for which there is no cure.

“As a mother, it is hard to watch sometimes,” says Carrie. “I can’t do it for her and I just want her to live a normal life.” Normal life for Macy consists of breathing treatments up to four times per day, nutrition through a feeding tube at night and regular insulin treatments. She also had to have surgery to correct the valve between the esophagus and stomach. Going to the mall or to a friend’s for a sleepover is no small feat. Macy has to consider her blood sugar, breathing treatments and nutrition each time she leaves the house.

“She doesn’t know any differently since CF has always been a part of who she is,” Carrie continues. “We try not to place too many boundaries on her. If she can, Macy will find a way to live her life to the fullest.” Border lining on the stubborn, Macy’s strong will is what sets her apart and enables her accomplish her goals, making her the one that nurses at Children’s Dayton Hospital wrangle to care for her during her treatments. Inspired by her caregivers, Macy dreams of becoming a NICU nurse.

While CF dictates much of Macy’s life, dance is the bigger part of who she is. She practices ballet, contemporary and jazz dance five days per week for two hours each of those days. She stays active not only because of her love for dance, but because regular exercise helps keep her airways clear. It only made sense then that when she learned that she qualified for a Special Wish, her first choice was to go to “Dancing with the Stars” (DWTS) and meet her favorite DWTS dancer, Derek Hough.

So, in September of last year, Macy, her mother, aunt and sister departed for Los Angeles for the ultimate girls’ trip. They had an amazing tour of Warner Brothers Studios and sat on the actual set of “Friends “ and “The Big Bang Theory”, celebrated her Sweet 16 at a hip restaurant in Hollywood and had another dinner on Santa Monica Beach where they were thoroughly entertained by beach performers.

“Meeting Derek Hough was definitely the highlight of the trip for Macy,” her mother remembers. “Everyone was so, so nice.” He and the entire cast of DWTS treated Macy and her family to a backstage tour and pictures, taking time out of their show preparations to entertain the family. They stayed for the live performances and were treated like royalty.

Another memorable part of the trip was a visit to the El Matador Beach, a truly spectacular beach off the Pacific Coast Highway with sea caves and large rock formations. Macy and her family were able to take some time and reflect on the limitless beauty of the ocean and imagine a life without boundaries. Macy Gehle hopes to live her life that same way.

Susan Gnann is the marketing and development manager for the Dayton Chapter of A Special Wish Foundation.