Different people have different medical conditions that affect their everyday life. For sophomore Aidan Jones, that is a medical condition called cystic fibrosis, or CF.
CF is a lung and pancreatic disease. “I have a ring of mucus around my lungs. It’s as thick as toothpaste. I produce a lot more salt than you guys would and I don’t gain nutrients as well so I have to take medicine. I’m also insulin intolerant right now, so I’m pre-diabetic,” Jones said.
CF is genetic. It is autosomal recessive which means that both parents must be carriers of it for their kid to get it. Jones said he was diagnosed with it when he was 2-years-old. “Getting Aidan’s positive diagnosis was both devastating, and weirdly enough, a relief. He had been misdiagnosed multiple times before his doctor suggested a sweat chloride test for CF. It was nice to finally have an answer to be able to get him the care he needed to get healthy,” Aidan’s mom, Melissa Jones said.
When Jones was first diagnosed Melissa Jones said she felt like she had to know everything about CF, but after reading some really heartbreaking stories and learning about some pretty horrifying symptoms, she realized that she only needed to know everything about what Jones was dealing with at the moment.
“I learned to let him live life. I couldn’t keep him in a bubble. He has been fortunate enough to be relatively healthy and have an active and typical childhood, but we are still thrown a curveball periodically with a bacterial infection, high glucose levels, or low weight gain,” Melissa Jones said.
Najeeb Hourani, Jones’ friend, said that the pair have been friends for 2 years. Hourani said that Jones doesn’t always talk about his CF, but will sometimes joke about it.
“When I found out that Aidan had CF I didn’t care. Him having Cystic Fibrosis does not change our friendship,” Hourani said.
Before he eats anything with fat or protein Jones said he has to take certain pills, he does 3 inhalers a day, and he has a vest that he puts on and it shakes him for twenty-five minutes to loosen up the mucus, he also has to use a nebulizer. “It’s a machine that turns liquid medicine into steam. I have a mask that I use to inhale the medicine with. There is no cure for CF as of right now, but there might be one around the year 2040,” Jones said.
Jones runs cross country. He said if it’s super hot out he will need a lot more salt intake because he gets rid of so much, but other than that CF doesn’t affect his running.
“Being a caregiver for someone with a chronic illness can be stressful and exhausting. It was especially this way when he was younger and we were learning about the disease, new medications, and how to do his airway clearance treatments,” Melissa Jones said.
Once every three months Jones goes to the hospital for regular check-ups with a nurse, a respiratory therapist, a nutritionist, a social worker, a nurse practitioner, and a pulmonologist.
Then, every six months, he has his blood glucose levels checked, testing for diabetes.
“I did have to go to the ER fairly recently, but it wasn’t superbad. It was a pulled muscle, but it was really hurting my lungs so they wanted me to get checked just in case, but I was fine,” Jones said.
Melissa Jones said that Cystic Fibrosis is part of their family’s daily routine. Jones’ younger siblings even remind him to take his medicine and do his treatments.
“After his diagnosis, our friends and family started walking on his behalf each spring in Great Strides, a fundraising walk benefiting the CF foundation. In the 15 years that we’ve been walking, Aidan’s ‘Dream Team’ has raised over $275,000 for CF research and patient assistance programs,” Melissa Jones said.
Melissa Jones said, “When Aidan was 11 he was granted a wish trip to the Atlantis Resort by Children’s Wish International as a reward for all of his hard work staying healthy. His daily routine is pretty intense and takes up to 90 minutes. Jones also just received a portable vest for his airway clearance treatments, which allows him to move around during his treatments.”
There is a life expectancy for people with CF. “When I was born it was around 34. It has gone up, I know that it’s in the 40s range now. I will most likely live past it. I’m extremely healthy,” Jones said.
