Today Leo is still battling back in therapy sessions aimed at strengthening his muscles and improving coordination. He’s re-learning things he used to do as a baby.
Leo and his parents in water therapy. Credit: Carly Danek, KARE 11
“He had to learn how to roll over. He learned how to swallow again. He had to practice using his fingers,” Stephanie said. “Basically he couldn’t even crawl,” Josh added.
Experts say all of this could have been prevented.
Turns out, Leo had a rare genetic disorder that prevents him from breaking down certain proteins and fats, allowing too much acid to build up in his blood.
“They confirmed in this test that it was Methylmalonic Acidemia,” Josh said. It’s known as MMA.
If it would have been detected earlier, Leo’s condition could have been managed with medicine and a special diet. He could have been just as active as his little sister.
So why wasn’t it caught?
Genetic problems like MMA can be identified by testing a few drops of baby’s blood, something required for all newborns in Minnesota.
But records show that on one key marker for MMA, Leo tested at 0.38, barely below the cut-off that would have required more testing.
Stephanie Carleton. Credit: Carly Danek, KARE 11
“It was super close,” Stephanie says she learned much later. But since it was below the cut-off, the test result didn’t trigger red flags.
“And so the doctors received the cover page of negatives. It said that he was fine,” Stephanie said.
That’s what angers Leo’s family.