Heartless Sign Tells Parents of Child With Rare Disease to 'Let the Baby Die'
An Ohio family who posted flyers asking for support was stunned after someone added cruel signs suggesting the family should let their baby, who has two rare medical conditions, die instead of “begging” for money.
ABC13 in Toledo, Ohio, first posted photos of the hand-made signs left around the Franklin Park Mall in response to flyers the Ahlers family posted asking for help to cover rising medical costs for their son, Randy James “RJ” Ahlers.
Born in July, RJ has two rare conditions, according to a GoFundMe page set up by his mom, Angela Ahlers. This includes agenesis of the corpus callosum, which causes an underdeveloped brain, and the genetic chromosome disease, trisomy 9 mosaic syndrome.
RJ’s dad, KC Ahlers, noticed the red-and-white painted signs that appeared under their flyers explaining RJ’s medical conditions and asking for donations. A total of three were posted, according to KC.
“Stop asking for money. Let the baby die. It’s called Darwinism. Happy Holidays,” the signs read.
“I came out. I saw it. Immediately took the one down. There were other ones that were up, but somebody, some other good Samaritans kicked them down,” KC told ABC13. “It shocked me. I mean it really shocked me that somebody would have that kind of cruelty.”
"It shocked me. I mean it really shocked me that somebody would have that kind of cruelty," said the father of a Toledo boy battling a rare disease.
The cruel signs highlight how negative attitudes about kids with complex medical needs and disabilities are still far too common. RJ’s life, like those of all other children, is equally valuable.
“My son is an extremely happy child and has brought so much light into our life, it filled me at first with rage, and then immense sadness, that someone would think this way about any child, not just my child, but any child, healthy or otherwise,” Angela Ahlers told The Mighty. She added:
[The] signs that we put out was just so that other people would be able to see it and maybe want to help. And instead, this person saw this sign as begging. We’re not forcing anybody to do anything. We’re asking if they wanted to. And for someone to put that sign out there, obviously they have never had to deal with a child with special needs.
Though seeing the signs posted in their community was painful, Angela said since their story went public, the response has been overwhelmingly positive. Other parents who have gone through similar journeys with kids who have rare diseases also reached out to share their experiences, including some whose kids are now adults. Angela said this gives her hope.
“Whoever left the sign though, they’re not getting the response that they wanted,” Angela said. “Because what we have gotten is nothing but an outpouring of love and support, words of encouragement. People have shared their stories of things they’ve dealt with as well. … We’ve got nothing but positivity back and that’s what we’re focusing on at this point.”
The Ahlers’ story also highlights another issue many parents of medically complex kids or kids with disabilities face: the financial difficulty of covering health care costs. Angela said because RJ is so rare, there isn’t always a blueprint to follow for treatment. And when their health insurance company denies coverage, they’re left holding the bill.
“We hear this a lot from the insurance company: ‘not medically necessary,’ and so that comes completely out of pocket,” Angela said, adding:
The whole problem with it with him being so rare … [is] nobody knows what we’re going to need, especially not the insurance company. So how can they tell us whether it’s medically necessary or not? If my doctor says he wants this done, I’m going to get it done, because it is medically necessary. So fighting with the insurance company and the system is what is the hardest part.
Like other families, Angela and her husband both work full-time, so they don’t qualify for most social service programs or benefits to support RJ’s medical costs. The health department service coverage they do qualify for, however, doesn’t include all of RJ’s doctors. Other options they were presented are out of the question, Angela said.
“They told us to either get a divorce so that we can get, you know, the welfare coverage, or, you know, one of us quit our jobs. I don’t want to either quit my job or get a divorce,” Angela said. “With bills, rent and other bills, plus what I already pay out of my check for insurance, it’s like what am I paying for? I’m being paid to get denied.”
Facing steep medical costs to get RJ the care he needs, the Ahlers have turned to fundraisers, like posting flyers in their community and setting up a GoFundMe online.
Angela said they plan to take RJ to Boston Children’s Hospital, which has been conducting studies on trisomy 9, to get an evaluation and hopefully new insight on RJ’s conditions.
“I would much rather be proactive rather than reactive and try to get ahead of whatever we are going to be dealing with in the future because this is not just a treatment and he’s better. This is going to be a lifelong journey,” Angela said. “We just take one day at a time and wake up with a fresh start every morning to see what we’re going to combat this time.”
Header image via ABC13’s Facebook page