We've talked a lot on this podcast about using kids as content and where the line should be drawn. We've also talked about mothers posting pictures of their sick kids to get attention. But there is another side to the story. What if your child had a rare disease? What if one of the only ways to get the medical establishment and doctors to take notice of that disease was to shout about it at the top of your lungs, sometimes on social media? What would you do?

It's an impossible question.

Last November, Amanda Byerly's daughter Elin was diagnosed with retinol dystrophy, a disease that could ultimately make her go blind. And because the disease is so rare, there's not a lot of funding for it. So it is up to the parents to fund research and ultimately to find a cure. Amanda made the decision to post her daughter and the diagnosis on Instagram to raise both money and awareness.

But it's tricky, and Amanda has to draw new boundaries for herself every day about the things she should share to help educate people about Elin's disease and what might invade her daughter's privacy.

You can learn more about the disease here.

You can follow Amanda and Elin here.

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