Spinal tuberculosis — also called Pott's disease — is one of the most serious forms of extrapulmonary TB. It can take months or even years to diagnose, and when it finally is, you are handed a long antibiotic regimen and often very little else.

Living with pseudoachondroplasia, or raising a child who has been diagnosed with it, carries a particular kind of ambiguity. The diagnosis is confirmed, the genetic report is sitting in a folder, and the appointments are scheduled — but the picture of what is actually happening at the cellular level, and what can be meaningfully tracked or influenced, often stays frustratingly blurry.