Live Chat: What Happens When Your Son Has an Illness Unknown to Science

Illustration for article titled Live Chat: What Happens When Your Son Has an Illness Unknown to Science

For most of his life, six-year-old Bertrand Might has bounced from hospital to hospital with an illness no doctor had ever seen. Then came two turning points: first, he finally received a diagnosis, and second—perhaps more surprisingly—his father wrote a blog post that blew up on the internet.

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That blog post, titled "Hunting Down My Son's Killer," was republished on this very site, where it caught the attention of journalist Seth Mnookin. This week, Mnookin has a story in the New Yorker chronicling what has happened to the Might family since.

Bertrand's father, Matt, knew he had to find more patients with the same illness as his son for any hope of researchers or pharma companies working on a cure. That blog post was the seed of what he called a "Google dragnet" to find those families. Matt's blog post lit up the internet, made it to the front page of Reddit, and was forwarded from inbox to inbox. So far, the Mights have found nine other cases like Bertrand's. You can read our recap of the extraordinary story or the entire saga at the New Yorker.

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Bertrand's story about the struggles, resilience, and savvy of a single family, but it's also a larger story about how the internet is changing the medical system. Increasingly, patients with rare disease and their families are turning to find each other—for emotional support and also to further medical research.

Matt Might and journalist Seth Mnookin will be here answering questions about the story in livechat on Monday at 12pm ET. You can start asking questions now.

Top image courtesy of Cristina and Matt Might.

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DISCUSSION

sarahzhang
Sarah Zhang

This question's for Matt, too. Because this is a tech site and because Gizmodo plays a little part, I'm curious about the mechanics of your "Google dragnet" around your blog post. Here's how Seth describes it in his New Yorker piece, for the benefit of readers.

Half an hour after Matt hit "publish," Twitter began to light up. By the end of the day, "Hunting Down My Son's Killer" was the top story on Reddit. The next morning, an editor from Gizmodo, a tech blog owned by Gawker Media, asked Matt for permission to republish the essay. In less than twenty-four hours, the post had gone viral. The more it was shared and linked to, the higher it rose in search engines' rankings, and the easier it would be for parents of other children to find.

How did you first seed it, so to speak — did you send it out to a circle of friends and family? And how are readers finding the blog post now? Are there common search terms?