ChatGPT helped Ben and Ashley Thompson recognize that their son Jack’s symptoms needed urgent imaging, understand a difficult tumor diagnosis, and make care decisions aimed at keeping him alive while preserving his eyesight.
Jack, the fourth of five children, was born with many café au lait spots, light-brown patches that raised early concern. After multiple rounds of testing, the family received an NF1 diagnosis, a genetic condition that increases tumor risk; Ben remembers the early years as slow and fragmented, with long waits for answers.
Around age three, Jack began waking up nauseated with severe headaches, sometimes unable to play for hours. Ben used ChatGPT to make sense of those symptoms in the context of NF1 and prepare sharper questions. The information helped him recognize the urgent need for an MRI, which Jack’s doctor agreed with. In January 2024, the scan revealed a brain tumor sitting on both optic nerves, which control vision, in a location surgeons could not safely operate on.
Ben and Ashley then faced multiple options and, at times, conflicting recommendations with long-term consequences. ChatGPT helped connect doctors’ input, research, and prior appointments so they could understand the tradeoffs. “ChatGPT did not replace doctors,” Ben says, “but it fundamentally changed how equipped we were.” Some standard approaches, including chemotherapy intended to shrink the tumor, could also carry a serious risk to Jack’s vision; with their doctors, they chose careful monitoring and agreed on clear triggers for action.
To keep years of appointments usable, Ben built a custom assistant called JackGPT with the family’s own copies of Jack’s health information: visit notes, test summaries, and transcripts from specialist appointments. Ben records clinical visits, transcribes them, and updates JackGPT so he can ask practical questions later, including late at night: what was decided, what to watch for, and what to ask next. It also helps with day-to-day questions about repeat imaging, contrast dye used in scans, dental X-rays, and ingredients when the family is trying to avoid artificial dyes.
Deep expertise can be hard to reach from the family’s rural area. Using deep research, ChatGPT helped Ben identify a leading pediatric expert in Cincinnati and secure a call, giving the family a long-term backstop as Jack grows. Ben says ChatGPT is “one of the things that has saved Jack’s life.”
