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Mother of boy with rare genetic disorder tweets hospital bill and fears Trumpcare would make her son lose life

Lawmakers are trying to pass health care bill through Senate, meanwhile, this woman raises her voice. She has just tweeted the massive hospital bill for her son’s treatment. The tweet has gone viral for obvious reasons.

Alison Chandra’s son, Ethan, was born with a rare genetic disease. The treatment costs a lot and this disease facilitates the growth of body organs on the wrong side.

Heterotaxy syndrome literally means different arrangement, any of the internal organs can be malformed, missing, multiplied or misplaced. – Chandra told CNN in an interview

Ethan was born with 9 heart defects, his lungs are misplaced and both are on the left side of the body. His gallbladder and liver are with his heart which is quite unique. His stomach is also misplaced, it’s on the right side rather than being on the left.

This Friday she tweeted her son’s medical 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.

The caption says the content of the tweet. The total amount of the bill can be seen in a reply tweet.

Chandra later told CNN that without insurance coverage she would owe $231,115 for 10 hours in the OR, 1 week in the CICU and 1 week on the cardiac floor. The lawmakers are pushing a new health care bill and this matter has become personal for Chandra.

She said that she didn’t follow politics before November and for both of the presidential elections of Obama’s administration she was overseas. She said that the kids are being reduced in the budget for the care they deserve. No one knows that behind every law making there are real people who are going to get affected. 

The new bill raises a lot of fear for Chandra and her family. They think that the new bill will get approved and suddenly a lot of insurance coverage will end, like hospitalisation, prescription medications. The normal spleen function of the kid is absent, which will make him exposed to various diseases and can cause him an early death. So, he has to rely on prescription medicine for his whole life and this new bill is a kind of awkward thing to happen.

The tweet went viral and is viewed for more than 80 thousand 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. – said Chandra

The Congressional Budget Office estimated that that bill would take away health care for almost 24 million people.


  • How about you become a responsible adult and pay for your own health insurance. My insurance cost went up and my coverage went down (like many, many other working Americans) because we’re paying for everybody who doesn’t want to be a responsible member of society. If you can afford to have a child, you can afford to buy health insurance. Get off the entitled train and take responsibility for yourself. It’s not America’s problem, it’s yours. It’s unfortunate that people who are completely incompetent enough to not have health insurance are having children in the first place. Why should the hard-working people of America pay for you and millions of other people who don’t want to pay for insurance? It’s absurd. Uou should be embarrassed for posting this. Using a child to further your political agenda? Seriously pathetic.

  • And why should I be forced to pay for this?

    The planet has close to 8 billion people. Your kid would not be missed by most of us

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