Despite being in enormous pain, Mara Cray maintains a positive outlook on life.
The 15-year-old Lenape freshman was diagnosed with cystic fibrosis at birth.
Cystic fibrosis is a genetic disease that affects the lungs, the digestive system, pancreas and sometimes the liver.
She continually works against pain and discomfort to accomplish day-to-day tasks and said it is emotionally trying.
“Wrap that all into the course of the challenges of being a teenager and you have yourself quite a deal,” Cray said, noting she has a great support system with her friends and family.
“My parents help me a lot with all of the health-based regimen and I have a lot of friends who push me,” she said.
Cray maintains interests outside of school despite her illness. She has been studying video editing since she was 10.
Cray starts her day with inhaled medications using a broncho dilater, typically Albuterol. She also takes a mucus manipulator, which loosens secretions in the lungs.
Then, she has chest exercises where someone cups their hand on her back and pounds on her back to shake the mucus loose.
Sometimes she uses a “Smart Vest,” which Cray describes as “a straight jacket without sleeves.” The electrical vest vibrates and loosens mucus, which allows for more independence since she doesn’t rely on someone doing it for her.
Cray has to take pancreatic enzymes when she eats to combat digestive issues as a result of cystic fibrosis.
Also, physical exercise is important because breathing helps to clear her lungs.
Cray sees a pulmonologist and endocrinologist because she has cystic fibrosis-related diabetes and has been on an insulin pump since last summer. She also sees a speech therapist because of vocal chord dysfunction caused by cystic fibrosis.
And what has she learned from her experience?
Perspective.
“When you spend at least a month a year on intense IV antibiotics, possibly in the hospital, and you come back and a lot of your friends and people at school are stressed about midterms you are able to pick and choose what’s really important enough to worry about: health or academic life,” Cray said.
She was pleasantly surprised when her friendsm Shannon Gallagher and Maddie Moroski, created an event for Cray, who missed homecoming last fall.
Cray said many freshmen were at the restaurant where the party was held.
“I had been under the delusion that it was just going to be two of them and me,” she said, noting they sat at a large table with balloons. “That was really special.”
Sharon Cray, Mara’s mother, said cystic fibrosis presents challenges “day in and day out.”
She noted Mara has to take medications and exercise an hour a day just to maintain her health.
“She’s a fantastic kid,” Sharon said.
Mara has a 24-year-old brother. She had another brother who died at 9 in 2001. He also had cystic fibrosis and died of viral encephalitis.
“I’ve learned to take each day as it comes and try to live your life that way,” Sharon said. “If you try to get too far ahead of yourself the worry would just take you right under.”
Mara has created a YouTube video that sheds light on what it means to live with cystic fibrosis. It can be found here: http://www.youtube.com/watch?v=UT4CQPiJQdw
