When Jayna noticed strange bumps appearing on her 14-month-old son Jackson’s face and body, she didn’t hesitate. As a new mom, she quickly made an appointment with his pediatrician. What followed was the beginning of a life-changing journey. During the check up for the rash, the doctor heard a heart murmur and ordered an echocardiogram, just to be safe. Though they were told it would take months to be seen, Jayna pushed for an earlier appointment, already stepping into the role of advocate. “Three months was just too long,” she recalls. Her persistence paid off and Jackson was seen within two weeks.
A Difficult Diagnosis
The day of the echocardiogram, nothing could have prepared their family for what came next. Jayna recalls that the doctor came back into the exam room without a smile on his face and stated that Jackson had pulmonary hypertension and would need a lung transplant. Meanwhile Jackson was jumping around the exam room unaware of what was happening. The moment was devastating. But rather than being paralyzed by fear, Jayna and her husband, Matt, sprang into action.
Jackson was admitted to the hospital the next day for further testing, and the gravity of his condition set in. He was diagnosed with idiopathic pulmonary arterial hypertension (PAH), a rare and serious condition causing high blood pressure in the lungs. This increased pressure in the vessels is caused by obstruction in the small arteries in the lungs for a variety of reasons. In Jackson’s case, the cause was unknown. Their initial healthcare team had very little experience with pediatric PAH. So, specialists were consulted and Jackson’s parents pushed for a second opinion, which led to them connecting with pediatric PAH specialists in Colorado and Boston.
A Treatment Plan, A New Normal
Once a treatment plan was established that met his specific needs, Jackson’s parents began learning how to manage his disease. Although originally told he would need a lung transplant, it was later determined his condition could be managed with medications. Medications for PAH help make it easier for the heart to pump blood through the body and slow the disease progression. Jackson's treatment plan included a complex medication regime that involved administering medicine subcutaneously (under the skin) through a pump that he began using at just 19 months old. “We had to figure out how to manage a toddler with a subcutaneous pump,” Jayna recalls. “It was terrifying, but we knew it was what he needed.”
Their relentless advocacy and determination have been a constant throughout Jackson’s health journey. The family has made intentional lifestyle changes to support his needs, such as homeschooling their children, including brothers Jayden and Grayson, to reduce infection risk and staying deeply connected with the PAH community for guidance and support. Most recently, Jayna and Matt fought to secure a treatment typically reserved for adults but recommended by Jackson’s specialist. Jayna reached out to anyone who would listen, including congressional representatives, advocating tirelessly until Jackson was finally approved for the care he needed. “From the very beginning, we’ve done everything we can to ensure he is getting the best treatment options,” Jayna says.
Gaining Independence
But advocacy isn’t just something his parents do; Jackson is learning to advocate for himself too. Until 7th grade, Jackson was home schooled, but he had been pushing for change for years. “I was super bored being home schooled because I’m a social butterfly,” he says. “I wanted to be around people, be in class and talk with my teachers.” Jackson’s determination paid off and his parents decided to send him to a smaller school close to home to limit exposure to respiratory infections. Now in his second full year, Jackson is thriving and says, “I feel supported at my school, not just by the teachers, but my classmates who even remind me to take my medications!” He’s also stepping into more responsibility at home. “Up until last year, we tracked all his medications,” Jayna says. “But in 2023, we started letting him take the lead with our supervision.” Jackson knows his medications, can help with pump changes and communicates regularly with his care team. “My doctor is amazing,” Jackson shares.
Looking Forward
For other kids diagnosed with PAH, Jackson offers simple but powerful advice: “Don’t be afraid. If you take fear out of the equation, it’s not that bad. Trust in God—He’ll get you through.”
For Jayna, connecting with other families was a lifeline in those early days. “We found a Facebook group, Families of Children with PH, when it only had 100 members. Now it’s over 2,000. Today, I help run the group, it’s amazing to be able to give back.” Jayna’s message to families facing their child being diagnosed with PAH, “Learn as much as you can, connect with other families, build a daily routine and teach your child to participate in managing their health when they are ready.”
Jackson’s journey is far from over, but his family’s story is one of resilience, hope and empowerment. From the earliest days of diagnosis to school days and summer plans, the family continues to walk this path together one step at a time.
Learn more about pediatric pulmonary arterial hypertension (PPAH) and how to find a PH specialist.
Blog last updated: August 5, 2025
