Mom Tweets Picture of WHOPPING 231,000 DOLLAR Healthcare Bill For Son With Genetic Disorder

Mom Tweets Picture of WHOPPING 210,000 DOLLAR Healthcare Bill For Son With Genetic Disorder

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Mom Tweets Picture of WHOPPING 210,000 DOLLAR Healthcare Bill For Son With Genetic Disorder.

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. "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 Twitter Ads info and privacy Chandra also added up what their bill would have been without insurance: "Without insurance we would owe $231,115 for 10 hours in the OR, 1 week in the CICU and 1 week on the cardiac floor," she said in a followup tweet. 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." "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."

"Never in a million years did I think this would happen," Chandra said of her posts. "As a mother with a kid who has 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 hopefully this will lead to more awareness and maybe that mom who receives a heterotaxy diagnosis won't feel so scared." "To see him go from a kid who lost his breath after going up a few steps to a kid who can hike by myself, 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."

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