CNBC Cures is proudly underwritten by Alexion, AstraZeneca Rare Disease, whose support enables our journalism to elevate stories that advance research, innovation and patient care in rare diseases. John Paul Macri was a healthy, happy 8-year-old when early last year he began to trip. At first, his parents thought he was just clumsy. But after he started walking with a head tilt, they knew something was wrong. "He was like `Mommy, when my head is straight, everything is double,'" recalls his mother, Katie Macri. Doctors found a mass in his brain. In March 2025, his family received devastating news: John Paul had an inoperable brain tumor called DIPG. The five-year survival rate is about 2%.
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