Macee and Madi are identical twins who not only share a birthday but also the same disease – cystic fibrosis (CF). Despite the daily routine of breathing treatments, chest therapy and medications, the teenagers do not let CF slow them down.
Macee, the “creative one,” loves music and theater, and plays guitar and sings as a worship leader at their church. She is also an actress in plays at school. Madi, the “athletic one,” plays softball, lifts weights and runs track.
Kathy, the girls’ mom, says their diligence in sticking to a routine with treatments and medications keeps them out of the hospital. In fact, the only time the girls have needed inpatient treatment was right after birth.
Macee and Madi were born at 35 weeks gestation with signs of intestinal blockage. The girls underwent surgery to repair their intestines, and tests revealed CF, a chronic disease that primarily affects the lungs and gastrointestinal system. CF leads to abnormal secretions in the lungs that cause mucus plugging and can turn into infections, inflammation and a gradual decline in lung function. Patients with CF also take enzymes before they eat to help them digest food.
They visited Children’s Medical Center Dallas every day for a couple of weeks where doctors checked their weight and measurements and reviewed the treatment plan.
“When we walked in the door at Children’s, I had a list of questions,” Kathy says. “They answered all of them before I even asked. They also came up with a new treatment plan, since the one we came home with was so extensive that it left no time for sleep.”
Now Macee and Madi see Michael Brown, M.D., associate director of the Cystic Fibrosis Care and Teaching Center at Children’s Health℠ and clinical professor of Respiratory Medicine at UT Southwestern. Kathy says the staff are proactive and treats them like everyone is on the same level.
“You would think going to the doctor on a regular basis would be drudgery, but not in our case,” Kathy says. “It’s tiring and there’s a lot to it, but they always seem happy to see us.”
“Dr. Brown helps me stay healthy and genuinely cares about us,” Macee says. “He always asks for our opinion and includes us in the decision.”
The Center is part of the Cystic Fibrosis Foundation’s Therapeutics Development Network, the largest CF clinical trials network in the world.
As researchers discover new treatments and medication, the lifespan for CF continues to increase. Macee and Madi qualified for a new medication approved in 2015 that increases the activity of protein and prevents the downhill cascade of inflammation and lung disease.
“Researchers are working to make certain that a medication to treat the basic defect in cystic fibrosis, based on the different genetic mutations, is available not just for most patients but for all patients,” Dr. Brown says.
Staying healthy with a strict regimen
The twins have managed to strike the balance of keeping up with treatments and living as normal a life as possible.
“These girls never miss treatments or appointments and have done remarkably well with staying active,” Dr. Brown says. “They are the sweetest children you can imagine.”
Before starting each day, Macee and Madi wake up early for chest therapy, breathing treatments, inhalers and to take their medications – six to 10 pills including digestive enzymes to help them absorb nutrients. Macee says the routine, which they repeat after school and at night, does not phase them anymore; it is just another part of getting ready for the day.
Macee and Madi say they are happy to have each other because only people with CF truly understand the realities of living with it.
“Because we look healthy, the hardest part is getting people to understand CF,” Macee says. ”Madi is the one person who knows exactly what I’m going through.”
Transitioning responsibilities of care to girls
As Macee and Madi have gotten older, Kathy has put them in charge of their care such as mixing their own treatments and sterilizing the equipment.
Madi says they could not have made it to where they are today without the support of family.
“My mom has this instinct when she knows something isn’t right and she’s always there for us,” Madi says. “And my dad tries to make us tougher, telling us not to let CF limit us.”
Both girls plan on following their dad’s advice. After graduating from high school, Madi hopes to attend a faith-based college and work in the medical field. Macee plans on pursuing a career in music and theater arts.
Throughout their journey with CF, Madi says they have realized their purpose in it – “to help others and to make us stronger.”
The Children’s Health Cystic Fibrosis Care and Teaching Center manages the outpatient and inpatient care of approximately 400 infants, children and adolescents. Learn more about our services.
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