By: Jackie Miller, Esme’s Mom
Esme, our 10-year-old daughter, had a deep bruise on her arm that just wouldn’t heal. As a practicing emergency medicine physician, I knew it was something that needed to be seen. And fast.
Tests confirmed what my instincts already knew to be true: Esme had an aggressive bone cancer called osteosarcoma.
On the day of Esme’s diagnosis, December 11, 2013, Esme’s dad posted a photo of her to his Facebook page. It was a blurry iPhone photo of Esme in the doctor’s office and the caption read, “This is where the journey begins.”
We were blown away by the outpouring of support that resulted from that single social media post. Seeing just how many people were interested in providing encouragement for our daughter inspired us to create a personal blog Facebook page named Team Esme.
The Team Esme Facebook page gave us a community of people who met us with prayer and support for the bad news, and cheers for the good. We no longer felt alone.
We quickly learned what a powerful tool social media can be for families dealing with a challenging medical diagnosis.
Unfortunately, our family also learned that it can make you feel vulnerable and exposed if your information falls into the wrong hands.
In a story that’s stranger than fiction, Esme became the victim of an elaborate hoax that unfolded halfway around the world in Saudi Arabia. Some of the photos we posted to the Team Esme page—the same photos that ignited conversation that boosted our child’s confidence on the darkest days—were lifted from our page and used to raise money for a nonexistent charity.
Our precious girl had been given a fake name (Sara Ibrahim) and a fake story to raise money for a fake charity. More than 75,000 people followed “Sara” on Twitter, and she even became a trending hashtag. Hundreds of people believed they had donated their hard-earned money to support a family in need, and that money found its way into the hands of criminals. BuzzFeed even wrote a story about it.
And all the while, Esme was fighting for her life.
Unfortunately, our story is not one-of-a-kind. It only takes a quick Google search to see that many other photos of seriously ill patients have fallen into the wrong hands and been used to start fictional fundraisers on crowdfunding sites such as GoFundMe.
Today, I am so blessed to say that Esme has no evidence of disease. Our girl beat cancer!
If you decide to share your child’s journey on social media, remember that every word, every photo and every detail you share has the potential to be used in ways entirely outside of your control.