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“I need you to just be there. I need you to hold my story.”

screenshot of a photo of Andrew Kaczynski with his wife and daughter

In September 2020, I watched from afar as Andrew and his wife, Rachel, announced that their infant daughter, Francesca was diagnosed with an atypical teratoid rhabdoid tumor in her brain. Via his Twitter account, Andrew shared the experience during her treatment and after her death on December 24, 2020.

Before Francesca got sick, I’d never shared a single photo publicly of her on social media or anywhere…

But when she got sick, and we got the pathology report, we didn’t know what to fucking do. I basically put that first tweet about Francesca out there because I didn’t know what to do. I needed help. I needed help from anyone. It was an act of desperation, I’ll be honest. At that point, we’d only talked to one doctor — the one who diagnosed us — about treatment, and they’re telling you that your kid will be in hospital for months and on a feeding tube. When he gave us the diagnosis I dropped the phone and threw up and my wife had to take over the call.

The outpouring of support was something I never in a million years would’ve suspected. People started offering to help, other people began calling and texting. Maybe it’s because my experiences with the internet before that moment were never very positive, but I was shocked. That first tweet got like 200,000 likes or something.

I decided to go public because I needed help. So many parents of kids who also had ATRT saw my tweet and reached out and we spoke to some on the phone. By the end of the day we had a game plan with hospitals and which doctors to reach out to.

Read more in Galaxy Brain.

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