This is Ethan Chandra, a 2-year-old boy in New Jersey, who was born with a rare condition called heterotaxy syndrome. The birth defect affects a baby when it's developing and can lead to any of the internal organs being malformed, misplaced, multiplied, or missing.
On Friday, Ethan's mom got a lengthy bill for his most recent open heart surgery —but thanks to their insurance they owed the hospital just $500. Without insurance, they would have owed well over $200,000.
"If lifetime caps are reinstated, we simply won't be able to afford the out of pocket costs without insurance," Chandra said. "We would have to choose between his life and bankruptcy."
"A lifetime cap on benefits is the same as saying, 'Sorry, you're not worth keeping alive anymore. You're just too expensive,'" Chandra wrote in her Twitter thread that has since been retweeted by thousands of people.
"Tell that to the boy who just tucked a sick firefly into bed with a leaf blanket and told me to keep the light on so he wouldn't be scared," Chandra wrote.
"Tell that to the boy who picks me bouquets of sticks instead of flowers because he loves them better so he's sure I will too."
"Tell that to the boy who wraps his warm arms around my neck and snuggles close after a nap."
"Look my son in the eyes and tell him that he's fought so hard to be here but sorry, you're just not worth it anymore. I dare you."
"His life is infinitely precious," Chandra wrote. "That's why we fight so hard."
Chandra said she did not anticipate how viral her thread would go. "It's been kind of crazy, honestly, but I'm hoping that I can be a clear voice for our community and for kids like Ethan who stand to lose so much from this bill," she said.
"I just want to share our story, to get people to realize that politics are always personal, that the statistics you read aren't just numbers," Chandra said. "They're names and faces and little boys who stay up late catching lightning bugs."