Family Told to Let Their Baby Die Instead of Raising Money For His Rare Disease
Baby RJ was born with a rare birth defect and a chromosomal disorder. While raising money to pay for RJ's medical bills, his parents were stunned by a hateful comment telling them to just let their baby die. In an opinion piece, HLN's Lynn Smith dives into the story.
“Let the baby die.” Do not adjust your computer screen. Those were the callous words printed on a sign below one family’s plea for help. Their baby, RJ Ahlers, was born with a rare birth defect affecting his brain development and a chromosomal disorder that have left doctors unsure if he will live past his second birthday. His parents, Angela and KC Ahlers, continue to fight for his life and are asking for donations to help with the mounting medical bills to treat him.
Doctors recently discovered fluid in his head making the battle even tougher. RJ’s neurosurgeon is out of network as are some of the other specialists treating him. None of these doctors are covered by insurance and all the money is coming out of pocket. “That's a lot of the reason why we need the donations, so he can see the specialists he needs to see and get the medical treatment that he needs,” Angela told me on HLN’s On the Story.
RJ suffers from agenesis of the corpus callosum (AgCC), which means the center of his brain is underdeveloped. One in 4,000 people will suffer from the disorder and it can be challenging to treat. Trisomy 9 mosaicism, which RJ also has, is even more rare. There have been about 60 cases recorded of the often-fatal chromosomal abnormality. This boy needs all the help he can get, which is why this family’s story has now been shared across the globe.
The family started raising money through GoFundMe, community hosted fundraisers, and hung about a dozen signs around their hometown to share RJ’s story. That’s when RJ’s family says they found a disgusting response below one of their pleas for help saying: “Stop asking for money. Let the baby die. It’s called Darwinism. Happy holidays.”
Surely, this isn’t real life. No one could be so cruel. That’s exactly how Angela says she felt. She was outraged. “It left me speechless. You have to wonder what is going through that person's head when they're saying that," says Angela. "They're harassing a child; what makes them do that?"
Hate has reached unimaginable levels. Shame on someone for being that horrible and then having the audacity to hide behind a sign. It’s really no different than internet trolls hiding behind their usernames. It reminds me of the mother who lost her 5-year-old son to the flu and instead of receiving messages of hope and faith to help her through, anti-vaxxers spewed hateful comments and conspiracy theories about her. Serese Marotta became a fierce advocate for flu vaccines after losing her boy and she was met by a mob of disgusting posts, including some saying her story was a cover-up for the fact that she had murdered her own son. Another claimed she wanted others to vaccinate their kids so they would die from the shot and be in as much pain as she is. Imagine losing your child and having someone accuse you of these things.
We have so much hate that holidays like World Kindness Day have been created. This day, introduced in 1998, aims to inspire everyone around the world to be kind and do good. I say we don’t make it a day and instead make it a lifestyle. Let’s not fight hate with hate but spread kindness instead. Maybe we should all be raising money to get these people some help. And maybe no one should be allowed to write these types of comments anonymously either.
Luckily not everyone has been insensitive to baby RJ's struggle. Angela says the outpouring of support and love still outweighs the negativity of a few. “I can't even get a word for it," says Angela, "it has been so just astonishing."
Lynn Smith is the host of HLN's On The Story, which airs 12-2pm ET.