At only 4 months old, RJ Ahlers is confronting serious medical issues. When his parents asked for help, they were struck by almost unimaginable cruelty — but they've also found kindness and generosity.
When Angel Ahlers’ son was born, doctors knew something was wrong with Randy James. An ultrasound showed that the white matter in the center of his brain was underdeveloped, something known as agenesis of the Corpus Callosum. A month later, blood tests revealed the infant, who the Ahlers call RJ, also has Trisomy 9 Mosaic Syndrome. Both conditions are extremely rare.
The Ahlers felt overwhelmed.
“He’s going to have heart issues,” Ahlers, 42, of Toledo, Ohio, told TODAY Parents. "He’s already got fluid on the kidneys. He has fluid that is now building up in his head so we have a bit of head swelling.”
The 4-month-old might also suffer from cognitive and developmental delays. Right now, the doctors are observing the boy and treating symptoms as they arise. Ahlers and her husband, KC, faced the uncertainty as a team.
“We have done it side-by side,” she said. “We definitely tackle it head on.”
When RJ cries, the couple often worries that he’s bleeding internally or that his soft spot is getting bigger, which means more brain swelling. He has been treated by eight different specialists and already been to dozens of doctors appointments. While insurance covers some of their expenses, the family still has loads of bills. Like others, they’ve hosted fundraisers to help. Recently, they posted a sign on the side of the road directing people to their GoFundMe page. A few weeks ago KC spotted another sign beside it, reading:
“Stop asking for money. Let the baby die. Its called Darwinism. Happy holidays.”
“The initial knee jerk reaction was rage,” she said.
The couple filmed a video, which they shared on Facebook. In it, Ahlers said:
“We’re going to battle your hatred with love. We’re going to pray for you.”
After her anger dissipated, she realized empathy and kindness would be a better way to approach the mysterious sign-maker.
“I was thinking about it: There’s obviously something going on in that disturbed person’s life that made them feel compelled to do something like that,” she said. “I let them know that under no uncertain terms I was going to let hatred win out. We are going to teach our son that love wins above all.”
Since sharing the video on November 13, RJ’s fundraiser exceeded its goal of $20,000 and raised $63,787. The family feels overwhelmed by the generosity, and they can’t believe how many supportive messages they’ve received.
“Blown away. Definitely there was a time where I was just speechless,” she said. “I looked at my husband and he goes, ‘There are just no words.’”
A Toledo restaurant is hosting another fundraiser for the family on December 15, and they hope to raise enough money to take RJ to a specialist for genetic testing and to visit Boston Children's Hospital, where he might be able to enroll in a clinical trial. They’re sharing their story to raise awareness of rare diseases and the need for more treatments.
“Nobody's ever heard about (his condition) and it's rare and we need to make sure that people just research it,” she said.
Ahlers said she also hopes that others will become more empathetic after hearing about RJ, who is a “very happy baby” who “smiles, laughs, giggles and coos” all the time.
“Not everything is as it seems. Our son looks like he’s just a normal kid but there’s other stuff going on,” she said. “If my son facilities global love, that’s great because he’s united a lot of people.”