Leo's Journey—an illustrative story

When Maya and Daniel’s son, Leo, was a baby, they felt as though they were always making another bottle and changing another diaper. At first, they assumed it was a phase. Then Leo’s weight gain slowed. They tried feeding advice, tracked what he drank, and kept asking why he seemed so thirsty.

After blood and urine tests, they learned that Leo’s body was losing water faster than it should. Further testing gave the family a name for what was happening: AVP-R, also known as NDI.

A diagnosis did not make the appointments, planning, or worry disappear. It did give them a clearer way to care for Leo and explain his needs to others. They also wanted to find parents who would understand why an ordinary day could require so much preparation.