Meet our baby Grace. Gracie is 7 months old and has been diagnosed with Hurler syndrome. Yesterday morning it was a death sentence; a family tragedy. Today, it is a staggering blow, but not one without hope. It is the beginning of Gracie's story, and it is quite possibly the beginning of a much longer and happier story than might have been anticipated in even very recent years.
This is not my story. My story is one of ordinary babies with ordinary problems, and one near miss. This is my sister's story. My niece's story. It is no near miss, but a direct hit, and yesterday, it set my sister's family reeling.
If there is a hero in Gracie's story, it is my brother. He is the guy who walks the walk. Within an hour or two of Gracie's diagnosis, he had found the only two programs in the United States specializing in Hurler syndrome, spoken to a research physician at the University of Minnesota (the other program is at Duke University), and scheduled a phone conference with a nurse associated with the Minnesota program.
In short, we are initially impressed with the people at Minnesota. The program as described to us, is comprehensive in its scope of treatment. They are ready to start working right away, as Hurler's is a degenerative disorder and time is of the essence. It is refreshing to have a shared sense of urgency with one's doctors, no?
And so, baby Gracie's first step into Hurler Syndrome will likely be toward Minnesota, and very soon. She steps into what is unfamiliar ground for just about everybody, and thankfully so. Had she been born at another time, she would face only a short, sad walk to the end of Hurler Syndrome.