You Might Relate to This Mom's Viral Tweets About Lifetime Limits If Your Child Is Sick

In the two years since Ethan Chandra’s birth, he’s had four open heart surgeries and a pacemaker installed. His most recent surgery, which his mother Ali Chandra shared as part of a viral tweet storm, cost $231,115.

Thanks to the family’s insurance plan, Ethan’s procedure cost $500. However, current proposed changes to health care policy, which could place lifetime limits on how much insurance companies would spend per person or condition, could make it difficult for the Chandras and families in similar situations to pay for long-term critical care services. Advocating for her son, Chandra shared her family’s story on Friday in a series of tweets.

Ethan has heterotaxy syndrome and was born with nine heart defects. “He takes 5 different prescription medications multiple times a day. All of this adds up. None of this would be possible without insurance,” Chandra tweeted.

With one surgery costing around a quarter of a million dollars, Chandra pointed out that with four surgeries under Ethan’s belt and frequent appointments with specialists, he long passed the million dollar lifetime limit that used to exist. “He blew past the million dollar mark long ago; I haven’t even mentioned the ER trips for sepsis workups every time his temp goes above 100.4,” she wrote.

Without the Affordable Care Act, Chandra would not be able to pay for Ethan’s care, she told BuzzFeed News. “Because of Obamacare, we do pay high premiums, but that money is going into a pool that’s allowing kids like Ethan to receive coverage for almost all of his expenses, and we are so grateful for that.”

After tweeting Ethan’s story, Chandra made an impassioned plea to those supporting the Republican health care plan, stating those who support a lifetime cap on benefits should tell her son, “Sorry, you’re not worth keeping alive anymore. You’re just too expensive.”

Chandra’s tweets began raking in retweets and favorites within hours of sharing. The most popular tweet in the thread, a photo of her son and his surgical scars, was retweeted more than 27,000 times. Since going viral, Chandra has shared more of their family’s story, the road to Ethan’s diagnosis and their switch from Medicaid to private insurance. Chandra also addressed some of the negative comments people have sent her.

At the end of the day, Chandra said she just wants people to stand and fight to help keep coverage for kids like Ethan.

You can read Chandra’s full Twitter thread here

Find this story helpful? Share it with someone you care about.

Related to Heterotaxy Syndrome

To My Younger Self When My Son Was Just Diagnosed With Heterotaxy Syndrome

It’s been more than two years since my son, Ethan, was diagnosed with heterotaxy syndrome. It was the day I found out my journey wouldn’t be the one I had expected. It’s the day I lost my home and my community and my job, and the day that I started an entirely different life on an entirely [...]
screenshot of unbroken

The ‘Unbroken’ Scene That Motivates Me When Dealing With Dysferlinopathy

There are days when it is hard to tell whether dysferlinopathy affects me more mentally or physically. One of the most overlooked aspects of a muscle-wasting disease is the unrelenting mental grind. I find myself having to constantly adjust to my weakening body. I worry about whether or not the next step I take will [...]

Finding Joy as a Parent to a Child With Sanfilippo Syndrome

Do you experience joy each day? I can honestly say my daughter Keira, who has a terminal illness called Sanfilippo syndrome, experiences joy and bliss at least several times a day. Usually these moments are the result of something minor like our neighbor’s dog chasing a stick or just the word “cupcake.” I often wonder why it is [...]

5 Ways to Spread Autism Awareness When April Is Over

My son As a practitioner and mother of a child diagnosed on the spectrum, the end of April tends to be a bittersweet time for me; it’s when Autism Awareness Month comes to a close.  April is a time that brings the autism community together through events that raise awareness and money for research.  April [...]