Local baby battles two rare diseases since birth

Published: Oct. 8, 2019 at 5:59 PM EDT
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A local infant is in the fight of his young life battling two extremely rare diseases. Now, the family is asking for help to lessen the massive financial burden all of the special doctor visits and medical bills bring.

3-month-old Randy James Ahlers, or "RJ" is one tough baby. At birth, he was diagnosed with both Agenesis of the Corpus Callosum and Mosaic Trisomy 9 Syndrome. Now, his parents hope the community will rally to give their miracle baby a better chance.

"To me, he's absolutely perfect," said Angel Ahlers, RJ's mother.

Little RJ is quite a special baby boy.

"He is definitely the rare of the rare," said KC Ahlers, RJ's father.

KC and Angel Ahlers say their son has a rare chromosome disorder called Mosaic Trisomy 9 Syndrome.

"Because there's only 1,200 people in that world that have Trisomy 9 there's very little research done on this," said KC.

RJ also battles another rare birth disorder that impacts his brain, called Agenesis of the Corpus Callosum. It was triggered by the first disorder.

"When you read the stats that only 50 percent make it to age two you're constantly in fear. I can't think of anything worse than loosing this little guy," said KC.

The Ahlers are holding their breath - waiting, worrying.

"Constantly going down the list of is everything OK? Is this the moment? We have go bags packed for hospitals," said KC.

"Ready to go if we have to," said Angel.

KC built everything in RJ's bedroom. It is outdoor, camping and mountain-climbing themed. He built a special crib for their little explorer - fit with a baby CPR and medical bag.

"As we're getting everything together the room, the crib, all that we're thinking 'Oh, he could be a lawyer. He could be a doctor,' and then we get told that we have this miracle baby that has special needs. And now all of a sudden I'm like I hope he can tie his shoes. I hope he doesn't get picked on," said KC.

All babies cry, but if RJ cries.

"Any scream, any holler, could be the hole. You know, a hole is presenting itself in his heart," said KC.

So far, RJ has had one seizure. He has a heart murmur, likely will develop holes in his heart and have kidney among other complications.

Angel says her pregnancy was normal. They never saw this coming.

"We both busted out crying," said KC.

"I mean yeah, it floors you. Because I'm thinking he's perfect in every way and then they tell you he's not," said Angel.

RJ sees six specialists.

"Medical bills are bankrupting us," said Angel.

His parents hope they can afford a genetic test that isn't covered by insurance. It could cost up to $20,000.

"He's going to be slow. We don't know to what extent and it really all depends on how much care we get for him," said KC.

"He's our fighter," said Angel. "He's our miracle baby that is definitely strong. Definitely a gift from God," added KC.

On October 19, the Ahlers are hosting a special fundraiser for RJ.

RJ loves comic books, Disney and superheroes. His parents were married on Halloween and love the holiday.

From 9-5 you can find the family dressed in Marvel and DC character costumes at the intersection of Laskey, Tremainsville and Douglas in Toledo. The family is hoping you'll help them "fill the bucket!" with donations.

If you'd like to help in another way, here is a link to RJ's