July 10, 2017
The New Jersey mother who shared a picture of her child's costly health care bill says she's gotten death threats since the photo went viral.
Alison Chandra posted a photo of the bill for her 3-year-old son Ethan to Twitter, showing the tens of thousands of dollars it cost for her child's latest open heart surgery at Boston Children's Hospital.
Chandra sent the tweet in response to the GOP's legislative attempts to repeal and replace the Affordable Care Act. It's been retweeted more than 58,000 times since it was posted in late June.
In an essay for Vox published Friday, Chandra wrote that the response to her photo was overwhelmingly positive at first.
"People were ready to fight for a kid they’d never met, and they were sharing their stories with me in the hopes that I’d fight for their children too," she wrote.
As the tweet gained national media attention, however, Chandra said she started to receive nasty messages and threats, including someone offering her a bullet.
"The attacks became increasingly personal and increasingly violent," she wrote.
"Strangers were telling me it would have been cheaper to make a new kid, as if anyone in the history of the world could ever replace this bright light of mine, the boy who loves animals and can’t keep himself from kissing babies and always wants to sleep with one arm wrapped around my neck."
Her son has heterotaxy syndrome, a rare birth defect that affects the heart as well as other organs. Chandra wrote that the worst insults were those that blamed her genetics for giving her son the defect.
She said that while those comments were incredibly difficult to endure, there were silver linings to all the attention. One mom reached out to her to thank her because she had never been able to get a proper diagnosis for her son, but after reading Chandra's story and doing research, she learned it was heterotaxy.
"She finally had a name for the specter that stalked him, and with that, she could find a community and support as she advocated for her child."
Chandra concluded her essay by writing that she hopes her story serves as a hopeful one for parents who get the terrible news that their child has been diagnosed, and that some people may read it and realize that anyone could be one diagnosis away from "medical bankruptcy."
"Maybe this will be the thing that finally gets us to join hands across the political divide and aim our passion away from strangers on the internet and toward the people who are responsible for the laws that affect us all."
You can read her full essay here.