The Experience: When we were first made aware of Blake’s condition, we found out that it was very rare and also complicated. We were told the diagnosis followed by a terrifying statement, “Don’t look it up, outcomes are not good.” That said, what had been published about this illness was limited and not always current. Knowledge of this disease has improved greatly over recent years and advancements are happening every day. Our team didn’t want us to be defeated by what we might read, but remain hopeful as changes and innovations progressed. There were two paths for Blake, either his body would regenerate new healthy tissue and vessels in his lungs that would reduce pressures – and he could potentially outgrow the severity of his disease over time; or with medication and therapies we could maintain his health long enough to buy us time for the cure to one day arrive. How we wish time was still on our side…

The Mission: PHA’s Mission is to extend and improve the lives of those affected by PH.

The Ask: If you are interested in giving or getting involved with an association trying to shed light on this terrifying condition affecting children and adults around the world, click here: phassociation.org