RJ's message of love: How one Toledo infant ignited global compassion
By Brooks Sutherland / The Blade
Mon, 02 Dec 2019 12:30:00 GMT
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KC Ahlers crunched the numbers and the result was demoralizing.
The snowballing medical bills being thrown his way for the care of his 4-month-old son, Randy James, or RJ — who has two rare disorders that have left a small hole in his heart and swelling in his brain— were becoming more and more of a concern each time his insurance company told him the costs were “out of network.”
So much so, that the Toledo resident was ready to take a drastic measure to ensure his son received the proper care he needed.
“I was one step away from, this is no joke, putting on eBay, trying to sell to advertisers, space tattoo-wise on the back of my head,” Mr. Ahlers said inside his Toledo home Wednesday, one day before Thanksgiving. “As a father, I’ve been terrified. He’s my son. There’s nothing I wouldn’t do for him, and it was coming down to that point, like ‘what am I going to do?’”
That’s when Mr. Ahlers, a Cleveland native, and his wife, Angel, of Toledo, decided to seek some help.
The couple hung up posters around Toledo and asked for some assistance from the community to alleviate some of the burden associated with their son’s bills. They hosted a “Superhero Fundraiser” in October by Toledo’s “Wernerts Corners,” the intersection near Tremainsville, Laskey and Douglas roads, and raised $4,000. Then they created a GoFundMe page.
Mr. and Mrs. Ahlers hung up signs around Franklin Park Mall to support the GoFundMe page. It was, at first, met with a good amount of support. Community members donated and the page’s funds began to pile up.
RJ has Tetrasomy 9p Mosiac Syndrome, a rare chromosomal disorder that affects development, and agenesis of the corpus callosum, which affects his brain.
Last week, a counter-sign was hung up, in what appeared to be a protest of the Ahlers’ request for help. The sign, which was discovered by Mr. Ahlers, read: “Stop asking for money. Let the baby die. Its (sic) called Darwinism. Happy Holidays."
The couple became enraged.
“It hurt that someone would think that about my child,” Mrs. Ahlers said. “My knee-jerk reaction was rage.”
Mrs. Ahlers then posted a video on Facebook about the incident and a picture of the sign. The post read: “I’m so angry, I’m having a hard time expressing myself,” and the video showed Mrs. Ahlers holding RJ next to the sign. She voiced a message to whoever placed it there, that “we’re going to pray for you.”
The story was seen by thousands, many of whom reached out to the Ahlers family with messages of support. Media outlets all over the country and internationally picked up the story. It was written about by CNN, Fox News, The New York Post, The Today Show, and The Huffington Post, among others.
But the negative messages didn’t stop there.
RJ’s GoFundMe page raised $63,787 before the Ahlers family shut it down because of the amount. They were initially hoping to receive $20,000 because of a $10,000 test from a geneticist that they had to pay out of pocket. Mr. Ahlers said he stopped taking in donations because he couldn’t believe how much was sent, and felt that “others needed money as well.”
The page still receives messages however, and Mr. Ahlers was alerted to one on Tuesday.
“The problem cannot be fixed,” the message read. “The money would be better spent on someone else’s child who has potential to have a good life.”
The world loves RJ
Mrs. Ahlers said “keyboard warriors” haven’t ruined the family’s spirit, and insists the outpouring of support they’ve received from around the globe “outweighs the negative” posts that occasionally pop up online.
“They want you to just be as miserable as they are, and I’m not going to allow it,” she said. “Because you know what, I’m here and I’ve got this beautiful child that I’m doing everything for and I’m going to continue to do it. Their words are not going to stop me.”
But the negative words hurt because they “stay in your head,” Mrs. Ahlers said. The outpouring of positive words in response was overwhelming, the couple said. Donations with messages such as “Brazil loves RJ,” and “Australia loves RJ” were posted to the page, reigniting hope for the family.
“It’s so amazing,” Mr. Ahlers said. “Look, we’re all adults, and we’ve all had our moments of questioning humanity and how everybody treats one another because of all the negative crap that you see on a regular basis. And then something like this happens and I think the thing that amazed me the most is this precious little 4-month-old basically united the world in love and kindness. And I mean that was just so incredible. It just totally blew me away.”
“It left us speechless,” Mrs. Ahlers added.
No mountain too tall
Mrs. Ahlers, a nursing assistant at St. Anne’s Hospital, was six months pregnant with baby RJ when she and Mr. Ahlers, a landscape designer, hiked to the top of North Carolina’s Mount Mitchell, a 6-mile journey to the highest peak east of Mississippi, last April.
The climb, metaphorically speaking, won’t be tallest mountain her family, and in particular baby RJ, will face.
Statistics say only 50 percent of babies who battle the same conditions as RJ make it to age 2. Tetrasomy 9p is an extremely rare disorder. According to rarediseases.org, only 30 cases have been reported in medical literature. Two-thirds of RJ’s body has affected Tetrasomy 9p cells.
Mr. Ahlers has reached out to thousands of specialists and organizations to find answers for his son.
“Sometimes I get frustrated because I have contacted 152 different medical facilities around the world,” he said. “Within the last few months, I have sent out over 1,000 emails to different organizations and the most frustrating thing is not getting a response.”
But the Ahlers family has used their love of hiking to formulate a motto that keeps them going each day.
“As I was sitting down the other day, rubbing my head, I realized this is just another mountain we have to climb, and the way that we’ve always climbed our mountains is we do it one step at a time, we do it together, and we share the load,” Mr. Ahlers said.
Those exact words are scribed on the wall in the basement of the Ahlers’ home in a room described as the “RJ Command Center.” The room is filled with inspirational messages, a computer with quick access to his medical profile, and books about his conditions.
The uncertainty surrounding his son is difficult to process, Mr. Ahlers said.
“It’s scary as hell as a parent,” he said. “We already know for a fact that he’s going to be special needs. To what capacity? We don’t know and the reason why we don’t know is because he can’t communicate yet.”
“We want a roadmap,” he added. “We want to know, ‘OK this is what’s going to happen,’ and ‘This is what you’re up against.’”
So far, the couple hasn’t been given that information.
But some good news traveled Tuesday from the east coast. On Dec. 17, the Ahlers family will see a specialist at Boston Children’s Hospital who has treated two patients with the exact same disorders as RJ.
“Nobody in the state of Ohio has ever seen this,” Mr. Ahlers said. “I was so excited when I got off the phone with them.”
A lot to be thankful for
Not lost on Mr. And Mrs. Ahlers this holiday season is the gift of their son’s life and the generosity he’s been shown from people around the world.
On Sunday, Dec. 15, Sidelines Sports Eatery and Pub in Toledo will host a benefit for RJ with raffle prizes and a 50/50 raffle.
Mr. Ahlers reflects how he almost tattooed the back of his head to pay for his son’s medical bills and feels overwhelmed by the kindness his family has received.
“The love that the world has showed him and the generosity that everybody gave,” he said, “for the first time since he was born, I finally feel like I have breathing room.”
Mrs. Ahlers also feels thankful this holiday season.
“I’m just grateful for every day that he’s here,” she said.
RJ’s circle of supporters, referred to as Team RJ, is often found wearing superhero memorabilia. That’s because after weeks of no signs of “mile markers” such as forms of communication or smiles, the family saw RJ’s first smile while Captain America was playing on the TV.
At the fundraiser in October, RJ’s supporters dressed up as superheroes and the Team RJ symbol has since been adopted as a Captain America shield. Members of the Toledo Police Department’s SWAT Team, who showed up to the fundraiser, received Captain America necklaces.
Mr. And Mrs. Ahlers still don’t know what kind of battles lie ahead for RJ. His disorders can cause numerous complications. But in just a few months since his birth, the infant already has sparked a global campaign of kindness, the family says.
They hope RJ’s story continues to inspire others as he takes life “one day at a time.”
In fact, Mrs. Ahlers has plans to pen a children’s book about RJ’s journey and how he ignited generosity worldwide.
Her working title: “RJ’s Message of Love.”