A mother’s moving story about her two-year-old son with a heart condition has gone viral online, and shone a light on the issue of healthcare in the US.
Ali Chandra, 33, shared a picture on Twitter of the most recent bill for the treatment of her son Ethan – who has heterotaxy syndrome, a rare condition which invariably causes heart defects.
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. pic.twitter.com/pyUE2UxbWW
— Ali (@aliranger29) June 24, 2017
The bill cost Ali and her husband $500 (£391), but she said if it were not for health insurance they would have had to pay $231,115 (£180,601) – and she said in reply to the Twitter thread that Ethan’s frequent need for healthcare “blew past the million dollar mark long ago”.
He takes 5 different prescription medications multiple times a day. All of this adds up. None of this would be possible without insurance.
— Ali (@aliranger29) June 24, 2017
Ali, from New Jersey, said reinstating lifetime caps on benefits would stop Ethan getting the healthcare he needs.Barack Obama’s administration scrapped lifetime caps on health insurance in the US, but it is rumoured new president Donald Trump could reinstate the limit.
A lifetime cap on benefits is the same as saying, "Sorry, you're not worth keeping alive anymore. You're just too expensive."
— Ali (@aliranger29) June 24, 2017
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. pic.twitter.com/SAwsdHISPi
— Ali (@aliranger29) June 24, 2017
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. pic.twitter.com/Zu987SCGTK
— Ali (@aliranger29) June 24, 2017
Tell that to the boy who wraps his warm arms around my neck and snuggles close after a nap. pic.twitter.com/zznY4S7QtM
— Ali (@aliranger29) June 24, 2017
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. pic.twitter.com/IgdQOounyB
— Ali (@aliranger29) June 24, 2017
Ali’s heartfelt post has caught the imaginations of those online, with the original post being retweeted more than 19,000 times.“This has all been incredibly surprising, to be honest,” Ali told the Press Association. “It can often feel so lonely on this road. “To have so many thousands of people suddenly in our corner, voicing their support for Ethan and affirming the value of his life is incredibly encouraging.”
If it means anything at all, and I doubt it will, I would gladly pay an extra few % in taxes if it meant keeping your son covered.
— /grego (@Someguygrego) June 24, 2017
Yours is a heartbreaking and beautiful story. Thank you for sharing for all of us. Please listen, @clairecmc and @RoyBlunt.
— Kate Bender (@KateBender5) June 24, 2017
Maybe it's JUST ME, but this is what we should be doing…. TAKING CARE of EACH OTHER…. ( why is there a price tag anyway ?? confused )
— James Blugen (@Intheyear1964) June 24, 2017
“Ethan has no idea about any of this,” said Ali. “He turns three in a week, and he’s just concerned with being a normal kid now that we’re getting a little break from hospital stuff.”
Ali said she is starting a “digital scrapbook” of stories written about Ethan, to show him the impact his story had when he is older.You can hear more about Ethan’s story by going to the Facebook page his mother set up for him.