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‘He’s a fighter’: 3-week-old clings to life after rare diagnosis

CINCINNATI, Ohio. (LEX 18) — Jerry and Alana Farler haven’t left the hospital since early this month, when their son, Bo, was admitted.

“We have our moments, just one day at a time,” Alana said of their emotional state of mind after spending nearly three weeks in the hospital, a little more than one hour from their Lawrenceburg home.

Their first child was born on March 4 and sent home on March 6 with a clean bill of health. But that didn’t last for every long. Less than two days later, they knew something wasn’t right as he had no desire to eat. The family was sent to UK Hospital and, from there, told to go to Cincinnati Children’s Hospital, which is one of the few in America that’ll use dialysis on infants.

While doctors in Cincinnati await official test results, they believe Bo was born with a rare genetic disorder called Propionic Acidemia. Though incredibly rare, it is tested for after birth, but Bo was already not feeling well before those results came back.

“It’s like his body is producing poison, and he can’t get it out of his body,” Jerry explained of the disorder that prevents the body from breaking down certain fats and proteins.

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Alana said his liver and kidney are functioning as they should, for now, but Bo remains hooked to feeding and oxygen tubes. There’s been some progress, as he’s now able to take his medication orally.

“He’ll have to be on a very strict diet,” Alana said of the long-term care.

In order for parents to pass this rare disorder onto their children, they both have to be missing the particular gene that would cause this issue. Both are being tested now to determine which kind they are missing. Jerry said there’s a 25% chance they’d pass Propionic Acidemia to a second child if they were to have another.

As the medical bills figure to be exorbitant, many local businesses in their hometown have started fundraising; Taylor Belle’s Ice Cream and Burgers will be hosting a fundraiser this Sunday. Parlays Tavern is donating a portion of its receipts. And Casa Bonita restaurant did the same earlier this month.

“Just the thought that matters,” Jerry said of the money these fundraisers might generate.

For now, they’re just glad they caught this in time and didn’t ignore the signs. Propionic Acidemia is fatal if untreated, and even though Bo is receiving the best in care right now, there are no promises going forward.

“He’s a big fighter,” Jerry said, “likes to throw punches and has some attitude for sure,” he continued.