In the spring of 2016, my wife Melissa and I noticed Charlotte was more tired than usual. After visiting our primary care provider, we were repeatedly reassured, “She’s fine. Don’t worry.” Later that year, around the end of summer, Charlotte was running up a flight of stairs and fell, bruising her shin. Concerned, we requested a complete blood count test, which revealed Charlotte’s platelets were at 6,000. The normal range is between 150,000 and 450,000.

Charlotte was referred to a hematologist who couldn’t see her until the following Monday. Worried, my wife called the hematologist and asked what symptoms would warrant an emergency room visit. Charlotte presented with all of them.

At Albany Medical Center, Charlotte was diagnosed with an enlarged heart. After an 11-day wait to be transferred to a cardiologist, Charlotte received a right heart catheterization and was officially diagnosed with pulmonary arterial hypertension.

Our lives have forever changed as we became more health-conscious, not only for Charlotte but also for ourselves and our two other daughters. We are now more in tune with tracking data through a Fitbit, which really helps us look at trends and patterns for Charlotte and can almost pinpoint with near 100% accuracy when something is ‘going on’ with her.

Finding what works

We learned that finding the right medication to treat PAH depends on the individual. Everyone’s PH is unique, so everyone will respond differently.

Charlotte started her medication journey using a central line with Remodulin (treprostinil), and then added Letairis (ambrisentan) and tadalafil shortly after. She came off the central line due to an infection and went on the Remodulin subcutaneous pump. This treatment stabilized her condition for a few years, and her symptoms improved. She then switched to Uptravi (selexipag) for under two years and then Tyvaso (treprostinil) before going back to the Remodulin subcutaneous pump.

When she started Winrevair (sotatercept-csrk) in August 2024, we noticed an immediate improvement in her resting heart rate and reduced shortness of breath. My wife and I could tell Charlotte was turning a corner and feeling stronger than ever.

Before the injection, Charlotte struggled with small active tasks such as climbing stairs. At her November 2025 check-in appointment, her doctors reported that her heart was almost normal size, and even though she still has PAH, her pressures can’t be accurately assessed via echocardiogram because they are so low. She is now off her sub q pump and is taking Tyvaso (treprostinil).

Because she is off the pump and doing so well, she can’t wait to learn to swim when our family visits Disney World later this year.

Clinical trials

Charlotte was able to participate in Aimee Layton’s study, “Using Tele-Rehabilitation to Reduce Fear and Anxiety Around Exercise.” Layton, a pediatric cardiologist at Columbia University Irving Medical Center, aims to improve mental health for people living with pulmonary arterial hypertension through exercise.

Charlotte enjoys doing exercises from the trial and hopes her experience empowers people with PAH to do mild exercise to manage both their physical and mental health. Charlotte is excited that her clinical data might identify what is most beneficial for those with PAH.

Looking ahead

Charlotte is now a high school freshman and enjoys reading and writing fantasy novels. She is currently reading The Bletchley Riddle and The Inheritance Games. She also enjoys creating digital art and gaming.

Charlotte is one of the most resilient and toughest young girls we know. My wife and I say this as educators who have seen many students over the years. Still, it isn’t easy, and Charlotte acknowledges her struggles that come with living with an invisible disease. She wants to raise awareness to show others they are not alone and not to lose hope in their own journeys.

She has encountered many people who don’t know what PAH is or how to effectively treat or manage it. By raising awareness, Charlotte hopes to shine a light on an overlooked condition so no one goes undiagnosed or misdiagnosed for years.