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Toledo baby is in the fight of his life and could use a few superheroes on his squad

3-month-old RJ Ahlers is battling two extremely rare conditions - treatment for which is not covered by insurance. A superhero fundraiser is this Saturday.

TOLEDO, Ohio — It's true: Not all heroes wear capes. Some are just 3 months old and are already in the fight of their lifetimes. That's the case for Randy James Ahlers - "RJ" - and his parents, Angel and KC Ahlers of Toledo. 

By all accounts, Angela's pregnancy was fairly routine and there were no signs that the Ahlers' baby would be anything but healthy. So, it was a shock when RJ was born and doctors discovered he had not one, but two very rare conditions. 

The Ahlers' son has Agenesis of the Corpus Callosum or AgCC, and Mosaic trisomy 9. With AgCC, the center of the brain that facilitates communication of the two hemispheres is underdeveloped. About 1 in 4,000 people are born with this. Mosaic trisomy 9 is a rare chromosomal anomaly syndrome. This happens to 1 in 4 million babies. 

"Twenty minutes after he was born, the doctors came in and said they wanted an emergency neurological team to look at our son," KC Ahlers said. "They took him from us, and my wife and I were terrified. About an hour and a half later they brought RJ back to us and said the doctor would be in soon to talk with us.

"We were informed that this could mean RJ could have issues seeing, seizures, and mild to severe mental disabilities, and the potential for intellectual disabilities, facial dysmorphism, congenital heart defects, urogenital defects, skeletal defects, and central nervous system defects," KC Ahlers said.

The Ahlers were faced with some very hard to hear facts. Only 50% of children born with the conditions RJ has reach the age of 2. But, the Ahlerses are undaunted - they are exploring every possible option to help their rare son beat the odds. This comes at a steep cost, however. They already have more than $3,000 in accumulative medical bills for his condition from six different specialists, none of whom has ever worked with a Trisomy 9 Mosaic patient.  

Credit: Ahlers Family
RJ Ahlers has two very rare conditions - AgCC and Trisomy 9 Mosaic syndrome.

SUPERHERO FUNDRAISER

  • What: Fundraiser for RJ Ahlers
  • When: Saturday, 9 a.m.-5 p.m.
  • Where: Intersection of Laskey, Tremainsville and Douglas roads in Toledo
  • Who: Costumed DC Universe and Marvel characters are "filling the buckets" for RJ's tests

"He has medical tests he needs that we have not done yet because we cannot afford them. A DNA/RNA genetic testing of all major organs could locate the areas he has the mutated Trisomy 9. This will let us know what to expect," KC Ahlers said. "This test alone is $10,000 and insurance claims it's not medically necessary. Plus, we have the cost of any future tests and therapy he will need, which is a lot.

"Every day we wake up terrified that this is the day our child will have a hole present itself in one of his organs and bleed out and die. Every cry he makes, we have to worry, 'Is this that moment?' It's like walking in a minefield."

Angel Ahlers says they are willing to do anything for their son, even as medical bills are bankrupting them. They do have medical insurance, and she is a nursing assistant at St. Anne's, but many of RJ's medical tests are being said to be not medically necessary.  

"Just because he is different does not detract our love for him. He has a condition that is rare, and add the AgCC and now he is the rarest of the rare," she said. "We love him so much as the precious, one-of-a-kind treasure that he is, like a 25-carat diamond. How many of those are out there? Same as our son."

The Ahlers family absolutely loves comic books and Halloween - KC and Angel were married on Halloween - and they are combining the two in an effort to raise money to hopefully afford the tests that could extend RJ's odds. 

On Oct 19, RJ's family and friends donned superhero costumes in honor of their tiny hero,  the community rallied behind them to help fill the buckets for RJ's tests and treatments. 

Even Mayor Wade Kapszukiewicz went out to meet RJ! A fundraiser is being held for 3-month-old RJ who has been diagnosed with Mosaic trisomy 9. His family will be out at the intersection of Douglas...

If you would like to help, but couldn't make it out on Saturday, a Go Fund Me has also been established and can be accessed here.  

"He's our fighter," Angel said. "He's our miracle and our gift from God." 

Angela Ahlers RJ Trisomy 9 Syndrome Our son Randy James was born July 9th 2019, he was born with not one but two rare conditions. He has Agenesis of the Corp

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