Noah Wall is a singer, songwriter, and fiddler in the award winning acoustic band “The Barefoot Movement.”  Her nephew Jackson Wall was diagnosed with pulmonary hypertension (PH) at one year old. Jackson’s parents hold a golf tournament each year to raise funds and awareness for pulmonary hypertension (PH).

It’s December. I’m writing from the “comfort” of my band’s tour van as we head down the interstate to one of our last shows of the year.  As I sit here, watching miles of highway pass by in one state or another, my brother, his wife, and two children – one of whom is living with pulmonary hypertension (PH) – are finding what comfort they can at Duke Hospital.  My nephew Jackson is on the upswing from what could have been a life-threatening viral infection.  He’s six years old.  It’s one week until Christmas.

It was on a trip not unlike this one when I found out Jackson had been diagnosed with PH.  I wasn’t really familiar with those words. All I knew was that my family was told that this one-year-old baby needed a heart and lung transplant to survive. As his aunt, I was devastated. I can only imagine his parents facing this prognosis. Since then, his doctors have been working to give Jackson and his family more options. So far, no transplants have been required. The few years that have passed between then and now have been a whirlwind of hospital stays, painful transitions, and emotional strain for my brother and sister-in-law.  They had a lot to learn in a short amount of time. Jackson’s medication is administered through a vein in his arm. Just keeping this site free from disruption is a daily challenge.

I keep up from the road as best I can, following any Facebook photos or videos they post. Through these updates, I see some of the things they go through every day.  But I know that the little I can gleam from that digital platform is only a keyhole view of the whole picture.  I can’t imagine what one day in their life is really like.

We all have known people who seem to find a way to achieve the impossible in the worst circumstances. They find within themselves some kind of superhuman survival instinct. I always knew my brother was a great dad and his wife was a great mom.  But Jackson’s illness has tested them both beyond belief.  Sleepless nights, perpetual diligence to medication schedules, and constant vigilance in keeping Jackson unexposed to the types of colds and illnesses that most kids are exposed to all the time are normal parts of their reality — all of this on top of the typical challenges of raising children.

But my brother and his wife, Matt and Jayna, have risen to the occasion without question or hesitation. They have found the strength to face a parent’s biggest nightmare and remain standing.  Beyond the tireless efforts they make in their everyday lives for Jackson, they have also helped the greater PH community by organizing the “Driving ‘Fore a Cure For PH Golf Tournament.” Over the past few years this event has raised nearly $200,000 in funding for support and research. They are doing everything they can to help find a cure for this disease, not just for their own son, but for PH sufferers everywhere.  Here are two people who were handed a horrible situation, yet they have used their energy not to despair, but to do everything within their power to change that situation.

I don’t have any children but my husband and I hope to have a few, one day.  If we ever do, I will pray for their health, but should I be faced with something like this, I can look at my sibling’s example, and gather strength from it, knowing that someone I know has been through it, and survived.  Anyone can find inspiration in this story.  And I’m sure there are many others like them in the PH world.  People who love someone with the disease.  People who take action.  People who refuse to let a pulmonary hypertension diagnosis conquer their hope.

The Barefoot Movement recorded this cover of “Eye of the Tiger” to raise awareness for the “Driving Fore a Cure for PH” tournament and for children like Jackson who are living with PH.

Jackson Wall

Jackson Wall was diagnosed with pulmonary hypertension (PH) when he was one year old.

Jackson Wall

Noah Wall, second from left, plays violin in The Barefoot Movement.

This post is part of PHA’s The Right Heart blog series. Find out how you can share your story. Click here.