Carri Levy’s article about a New Jersey couple John and Amanda Miller, is one of many articles and blogs I’ve read about the Millers; it’s really struck a chord with me, too.
If you don’t know, the Millers seem like such a lovely couple, so kind, loving and respectful of each other, and at the same time, I think they’re pretty damn fierce given everything that’s happened to them…
After their son, Evan, was born with a “clean bill of health,” John and Amanda took their bundle of joy back home to begin their lives together as a family. And thus began the horrific nightmare that nearly cost Evan his life!
Within a matter of days, Evan nearly died because doctors only ran blood tests instead of urine tests, so they missed that Evan had Hereditary Tyrosinemia Type 1, a rare disease that is often fatal in newborns if left untreated.
But I don’t blame the doctors; they were only following protocol. The State of New Jersey only tests for more common diseases that afflict newborns—and they aren’t alone. Several other states follow this same practice.
So in my opinion, the blame should go to the New Jersey legislature for the delay in diagnosing Evan’s tyrosinemia!
But enough about that for now. The great news is that Evan is thriving and doing well—thanks to his parents who refused to be dismissed as being overly cautious new parents! They knew their child was gravely ill and fortunately they went from hospital to hospital until they finally got help.
Without going into a lot of detail about myself, because this isn’t about me, I will say that my heart goes out to the Millers and every other couple who have a child with a chronic or rare disease. It breaks my heart that children have to suffer because their parents also suffer—sometimes openly—though too often in silence.
A large portion of the time good-meaning people go on about their day not realizing the private hell that parents like the Millers face.
And with the divorce rate so high as it is, I’d sure like to know how couples stay together when they’ve got a chronically ill child to raise. Thinking of the tremendous pressure and added responsibilities, plus the financial burden that typically bankrupts families…well, it just breaks my heart.
Of course we want these babies—these children to survive and thrive, but how do these couples survive?! How do their families survive? How do single parents survive?!
