Jaylin Binkley (center), a first-year student at Indiana University-South Bend, is majoring in radiography and exercise science. The 19-year-old is on her college cheer team, participates in pageants and competes in 4-H, a program for kids and teens to learn about science, agriculture and civic engagement.

‘It’s all about finding what I can do with my health, not obsessing over what I can’t do.’

By Jaylin Binkley
When I was a child, I couldn’t participated in Little League sports because of my pulmonary arterial hypertension. Instead, I started showing rabbits for 4-H when I was in the fourth grade. After five years, I changed to goats.

I groom, train and care for my goats to ensure how they feel, walk and look are up to the judges’ standards. In competition, judges grade you on the goat and showmanship. Showmanship forces you to prove your knowledge of your goat and other goats in the arena. Judges ask questions such as, “Which goat in the arena deserves to win and why?”

I have three goats: Sparkle, Oreo and Willow Jean. I care for them all, and Willow Jean, the baby, lived in our house last year. I have a greater sense of responsibility from caring for my animals.

In 4-H, I’ve developed life skills, such as leadership and public speaking. I’ve also learned to prioritize myself, which is important with my condition. If I’m malnourished or running on fumes, how am I supposed to fully care for my goats? I will carry these lessons into adulthood.

Long journey

Twelve hours after I was born, both of my lungs collapsed. I was in the ICU for 17 days and went home on oxygen. At 5 months old, I was diagnosed with PAH and alveolar hypoplasia, a decreased number of alveoli in the lungs.

My mom told me she was terrified. Fewer treatment options existed then, and she Googled the life span for my conditions. Naturally, she thought it was the worst-case scenario. Luckily, my pediatrician was optimistic and instilled confidence in my parents.

At the time, the only medication available was Viagra (sildenafil). My parents had quite a battle getting insurance to approve it for a baby girl. I also needed oxygen until I was 4, as well as a feeding tube. I was diagnosed as “failure to thrive.”

Creating balance

I didn’t participate in gym class in school, which turned out to be a blessing in disguise. Instead, I worked with a school assistant on projects that were beneficial to my health. For example, in first grade, we created a food pyramid for my diet needs.

Life was about balance. I juggled school, cheer, goat showing and friends with doctors’ appointments, medication management and tests. I always planned ahead. If I knew I had a heart catheterization scheduled, I completed my homework and assignments the day before. That way, after my appointment, I could sleep and recover.

Clicking with care team

I wouldn’t choose another doctor. I feel like we have more of a grandfather/grandkid relationship than doctor/patient. Usually, people see doctor visits as a chore, but because I get to see my doctor, Gregory Montgomery, I actually look forward to them.

For the longest time, I took only oral tadalafil and ambrisentan, but now I have a Remodulin (treprostinil) Remunity pump. I call it “Hell Week” when I have to change the site of my pump. I knock on wood that I get six to eight weeks before I have to change the site and accept that the week of the pump change is just going to be bad.

One of my biggest scares was in 2019. I missed a month of school because one of my lungs collapsed, and I spent 26 days in the hospital.

When I was admitted, the surgeon put a chest tube in my lung to drain the fluid buildup. A week later, I had a surgical procedure where my chest wall and lung tissue were adhered together to regain the structure of my lung.

This condition is ongoing. There are good days and bad days, and you learn to really enjoy the good days and give yourself grace during the bad ones. I’ve learned to go with the flow and deal with it.

Cheering through life

In my sophomore year of high school, I became the cheer team manager and later turned into a second coach, trying to perfect the routines. My senior year, we had a new coach, and she insisted I join the team. It was cool to be with the team on the sidelines, especially during football season.

One of my former teammates coaches the Indiana University-South Bend team and offered me a spot on the squad. She knows my situation, which made the transition onto the team easier. I love the bonds I’ve made on the team, and it’s fun to do something we all love together.

In November, everyone on my squad wore a purple ribbon for PH Awareness Month. It was really special to see their support.

I also started participating in pageants and was named as Miss Michiana, representing the border of Michigan and Indiana. It’s great to participate in my community and give back. I sadly couldn’t compete at nationals this past year because I was recovering from a knee injury and couldn’t walk in heels.

I have realized it’s all about finding what I can do with my health, not obsessing over what I can’t do.

Lifelong memories

One of the hardest parts about this condition, specifically at my age, is that many people don’t understand what you’re going through.

When I attended my first PHA International PH Conference and Scientific Sessions in 2018, I met many amazing people who understood PH. For the first time, I could compare stories without having to explain myself. If we were playing tag, and I had to stop to catch my breath, everyone knew why.

At PHA 2018, I met one of my best friends, Madison Wegener, who was the face of PHA’s 2024 spring fundraising campaign. Her friendship helped me feel less lonely in this journey. When Madison said she was reluctant to use a wheelchair between classes because she didn’t want to be judged, I jokingly told her to run over people’s feet.

Madison sadly passed on, but I still think about her all the time and am in contact with her family.

Those connections, the ones where someone completely understands all the things I’ve gone through, are so rare and important. It was such a gift to be my authentic self with Madison, who knew and experienced everything I had.