Say what you will about genetic testing—or testing in general—but North Carolina is finally feeling out the waters when it comes to newborn testing.

The state is currently piloting a study to screen babies for MPS I, officially known as mucopolysaccharidosis type I, and most commonly known as Hurler syndrome.

In those with Hurler syndrome, because of a defective gene, the body doesn’t produce a certain enzyme, which results in cells not working properly. That certain enzyme isn’t able to break down glycoaminoglycans (GAG)—a big word for “large molecule.” Unfortunately, the result of this missing enzyme is a buildup of GAG molecules that impair vital organs and cause mental and physical disabilities.

On average, about 1 in 100,000 babies are affected by Hurler syndrome. If the damage isn’t stopped quickly, these children can expect to live between five and 10 years old.

That’s the very reason the folks of North Carolina might be in luck if this testing can find the problem ASAP and put the brakes on the development of Hurler syndrome.

Five to ten years of living isn’t a long time, especially when suffering from a rare, chronic disease. With that said, you’d think newborn testing for every kind of disease would be in place already. In your opinion, where is the hold-up? Leave a comment below!