Team Lugo

Our child decided to write her own story with Cystic Fibrosis this year. 

"People often say I’m strong and brave, but in reality, I’m not. I’d say I’m the complete opposite. I try my hardest every day to make the best of what I can and live in the moment, taking it one step—or I guess you could say one breath—at a time. I’ve lived with Cystic fibrosis for about 16 going on 17 years now, and I can say it’s definitely been an adventure. A scary one, a fun one, most definitely a loving one. Even though I don’t show it at times, I’m glad to have everyone by my side who has helped me get this far, health-wise and simply as a person.

 I’m a fun and talkative introvert who LOVES to discuss anything and everything. I’ll talk for hours if you get me going. My favorite things to talk about are my long detective video games, favorite TV shows, philosophy, psychology, my amazing music taste, my loved ones, and most importantly: Art. If I had to say what my aspiration is in life, it would be to create games or comics that really speak to people, something that you save a little piece of your heart for. Art has got me through tough times in the hospital and has always kept me smiling. If I could make something that lasts and leaves an impact on someone, then that would be enough for me. Now enough about me as a person, I’d like to describe some parts of my life with CF and how I’ve overcome most of the challenges I’ve faced.

My mother first found out that I had Cystic Fibrosis when she was 3 months pregnant. I can’t speak for her fears or worries, but I know my entire family prayed for my safety and well-being. Yes, my life has been harder than that of a normal person, yet it never felt that way to an extreme. Not to say that having CF is a “breeze”; the amount of needles and pills I have to take is unimaginable sometimes. But having an amazing support system and medical team has made me the happiest person I can be.

My struggles with CF started from day 1 with weight loss and constant stomach pains. I was put on enzymes at 8 days old and would have to pour the little pellets from the pills into applesauce. Can you imagine eating applesauce with little hard pellets as an infant? It was definitely something… I grew and gained very slowly, so much so that my family had to contemplate inserting a NG tube in my belly for stomach feedings, and I developed pseudomonas when I was less than 1 year old in my lungs.

 As a toddler, I didn’t let anything stop me! I loved to climb and run all over; heck, I can still be a bit hyperactive, and I’m now 16. I was so bad that one of my doctors suggested a helmet to protect my head because every time I had an appointment, I would show up with a new injury and a very outrageous story. From what I was told, I hardly ever threw a tantrum. I was just nonstop to the point where I made even the most patient people want to pull out their hair. I was quite troublesome, but at the same time, everyone enjoyed watching me do one-handed cartwheels or even skating on my IV pole when I wasn’t supposed to. Never did I not find some sort of joy out of tough situations. I loved to challenge people; if my mom scolded me, I would just smile and laugh until she eventually laughed; this, by the way, hasn’t changed much.

When I was 3 years old, I had to be admitted to get 5 procedures in 1 day, which thankfully I don’t remember. Since then, I’ve had more than 15 procedures (bronchoscopies, endoscopies, sinus clearing, including the insertion of my port due to my veins not tolerating PICC lines, etc.). To be honest, I’ve actually lost count, so it could be more. At 5 years old, I had 5 hospital stays of more than 10 days each, including a trip to Boston for a second opinion on treatment; that was probably my WORST trip. I always made the best of wherever I ended up, playing and capturing nurses’ hearts as they’ve said. My trip back from Boston to FL was the most difficult so far, requiring me to have an oxygen pump and go straight to Joe DiMaggio, the most amazing hospital with loving and caring nurses and doctors. This was a very scary and challenging time; I kept getting sick no matter how diligent my family and I were with therapies and care. It was extremely difficult for everyone to smile, laugh, and provide a sense that everything was fine so I could continue living life with glee; however, my loved ones’ hearts ached with the pain of uncertainty and helplessness.

Thankfully, together with my doctor’s care (Dr. Martinez), I’ve been able to maintain good weight and have had much fewer hospital stays. I went 3 years without a hospital visit. The improvement was all thanks to Trikafta, which has made such a difference in my life. I went from 80 on my lung function tests to 90-98! I can also enjoy a pretty average life as long as I stay consistent with my meds and treatment. No one ever thought I’d be able to be this healthy and do anything anyone else can, but I’ve made it this far. I can’t wait to see where life takes me as I finish off my junior year of high school and start the new chapter of my life that is: College."

Join our team to help make a difference in the lives of all people living with CF. To become a member, click the "Join this team" button. From there, you can donate and start fundraising.  

As a member of our team, you are joining a growing community of people committed to finding a cure for cystic fibrosis. Together, we can make CF stand for Cure Found.