I get asked all the time, “How is Mia?” Umm, well… you see; that’s a loaded question isn’t it? That is really really difficult to answer. Why? Because the Remodulin is doing its job SO well that the kid doesn’t look like she’s even sick; let alone like she’s dying.
So everything is back to normal right? No! It isn’t!! It really really isn’t!!! Pulmonary Hypertension doesn’t have a cure. Period. So she’s not actually really all that great at all!! She just looks great! Sure, she feels better, that’s a relief… but absolutely nothing has changed for me. Nothing. I actually don’t feel any better at all! Why? Because I still have a daughter with a fatal disease. FATAL. With no Cure.