Living with cystic fibrosis (CF) can be a challenging experience, and for Conlee and his family, this has been the case since the day he was diagnosed. As we continue highlighting those in the CF and Team IMPACT communities throughout the month of May, we talked to Conlee’s mother Kristina who shared their story, including their family’s love of travel, going to airplane shows, being active outdoors, working on old cars, and living with CF.
Cystic fibrosis is a genetic disease that affects many parts of the body, not just the lungs. While CF is most known for its impact on the respiratory system, it can also affect the digestive system, sinuses, and more. Despite CF being a relatively rare disease, the CF community is a tight-knit group. Only about 40,000 people in the US have CF, but over 10 million Americans are carriers of the disease and may not even know it. A common misconception about people living with CF is that they are limited in their physical abilities, but this is not true for everyone. Conlee has a high tolerance for physical activity and is able to live an active life. He started playing tee ball as soon as he was old enough and loves running around, playing basketball and baseball, and being active.
While Conlee’s life may look typical on the outside, at home, he works hard to stay healthy, attending countless doctors’ appointments, getting plenty of sleep, and keeping up with schoolwork. Despite the challenges of living with CF, Conlee has learned to adapt and mature quickly, surprising even his parents with his resilience. “Because of CF, Conlee has been forced to mature much more quickly than most kids his age,” Kristina said, “and we’re constantly amazed at his resilience and ability to adapt to everything asked of him.”
Kristina hopes that by sharing Conlee’s CF journey, she can help bring more awareness to the condition. “Everyone with CF is different, but for Conlee, his routine consists of breathing treatments along with at least one hour of vest therapy or percussion therapy,” Kristina shared. “He also takes around 30 pills a day. Some of the pills he takes are to treat the underlying cause of CF or its symptoms, but the majority of the pills are needed due to the fact that he can’t digest food properly and absorb all of the fat and nutrients. For the most part, Conlee does all his treatments and takes all of his medications extremely well. We encourage Conlee to include his friends and family in his daily needs so he doesn’t really skip a beat. We really admire this about him. He has never been shy to share any aspect of his treatments with anyone.”
Despite this, Conlee still sometimes struggles with having a disease that his friends and family do not. “He is, however, an eight-year-old who just wants to play and hang out with his friends so sometimes it can be a pain to have to pull him away from activities to take his pills or do his treatments,” Kristina said. “Sometimes we have talks about how he has to do all of this, but nobody else that he knows does. He has mostly decided that this makes him unique which is a great thing, but there are moments where some pretty heavy questions arise and we just take them one at a time and work our way through the best we can.”
Conlee has always been interested in sports and staying active, so hearing about Team IMPACT felt like a perfect way for him to make new friends, build his confidence, and help him come out of his shell. He was matched with the Ohio State Baseball team in September of 2022 and recently celebrated his Signing Day with the team. Even though the match is relatively new, Conlee’s family is already noticing positive changes in him because of his new team.
“We have noticed Conlee’s confidence has already improved tremendously,” Kristina said. “He can be pretty shy and nervous, especially when meeting new people, but since meeting the team, he is much more social and outgoing with them in particular, but also in other social situations. He holds conversations with some of the players and even walks up with them to give high fives and encouragement without his dad or me walking with him, which is a huge step forward.”
Team IMPACT has filled a space where camaraderie and community was needed for Conlee and his family. Dealing with CF can feel isolating and lonely, especially when people do not get to see all the daily struggles that come with having the disease. Conlee’s family shared that it can be challenging to relate to other families since they are always focused on keeping their child healthy in ways many other families do not have to be. “It’s a lot to take on mentally and physically, and to be honest that’s pretty hard for me to admit,” Kristina shared. “We want to act like CF is a small part of our lives, and sometimes that is true, but more often than not, it feels much more consuming. Sometimes when we get caught up in all of the medical stuff and the day-to-day stuff that we forget to take a time out and just be a family and do the things that everyone else does.”
“Team IMPACT is like a big hug for our family and a reminder to take time to have fun,” she said. “We all look forward to our time spent with the team, and when something comes up in our lives, Conlee can’t wait to share it with the team. He looks up to them like big brothers which is also really cool since he doesn’t have any older siblings.” And that familial feeling goes both ways. The team always checks in on Conlee before and after his surgeries. “They are super encouraging and ask for updates, which is extremely endearing and makes Conlee feel special,” Kristina said.
The benefits continue onto the playing field as well, with Conlee now playing toward a bigger goal. “The Team IMPACT experience has been so wonderful. Conlee has something to look forward to in between treatments and appointments. He has learned more about baseball too. He is playing baseball on his own team, and we’ve seen an improvement in his physical ability after watching his teammates play. He wants to be a better baseball player so maybe one day he can play for the OSU Buckeyes too!”