Mother of boy with rare genetic disorder tweets hospital bill

Posted at 10:46 AM, Jun 26, 2017

As lawmakers push to get a health care bill through the Senate, one New Jersey mom is speaking out.

Alison Chandra's son, Ethan, was born with heterotaxy syndrome, a rare genetic disorder in which organs form on the wrong side of the body.

"Heterotaxy syndrome literally means different arrangement," Chandra told CNN. "Any of the internal organs can be malformed, missing, multiplied or misplaced."

"Ethan was born with nine congenital heart defects and he has two left lungs. Five or so spleens of dubious function, his liver, and his gallbladder are down the middle of his body along with his heart, and then his stomach is on the right instead of the left side," she said.

On Friday, she tweeted her son's latest hospital bill and it went viral.

"It seems fitting that, with the #TrumpCare debate raging, I got this bill in the mail today from Ethan's most recent open heart surgery," she wrote

With lawmakers pushing a new health care bill to the Senate floor, the health care debate has become personal for Chandra.

"I didn't follow politics before November. I was overseas for both of President Obama's elections," Chandra said. "I have been shocked at how loudly each side yells about their specific talking points. It paints these issues as black and white when they are anything but that."

"It seems like our kids are being reduced to a line in a budget," Chandra said. "No one seems to realize there are real people behind it."

The new bill also raises some fears for Chandra and her family.

"My fear is that this bill comes into play and suddenly essential health benefits are no longer covered, like hospitalization, prescription medications," said Chandra. "He will rely on prescription medications for the rest of his life. He is functionally asplenic and will need to take prophylactic antibiotics the rest of his life to prevent and protect against sepsis, a huge risk of death for our kids in the heterotaxy community."

Since posting Ethan's medical bill on Friday, the tweet has been retweeted over 50,000 times.

"That is why I like to tell our story. Maybe you hadn't thought of this side before. You don't picture a 3-year-old with all these fees."

"Never in a million years did I think this would happen," Chandra said of her posts. "As a mother with a kid who has a disorder, you feel alone. I have now found a community of other heterotaxy families and the community is just so excited that heterotaxy is a word that is being spoken about on a national level. I am really hopefull this will lead to more awareness and maybe that mom who receives a heterotaxy diagnosis won't feel so scared."

But the mother of two says at the end of the day, the medical bills mean so much more.

"To see him go from a kid who lost his breath after going up a few steps to a kid who can hike by himself, be able to keep up with his sister and his friend, that is what that medical bill gave us and that is priceless to me."

"We just want him to be a kid."