Family Battles to Help Toddler Who Must Eat Every Hour to Stay Healthy

Owen Torti's body will break down muscle if he doesn't eat every hour.

ByABC News
October 27, 2015, 3:15 PM

— -- A Georgia family is hoping to raise awareness for their 23-month-old boy after he was diagnosed with a rare metabolic disorder that means he has to eat every hour to stay healthy.

Owen Torti was diagnosed with LCHAD (Long-chain 3-hydroxy acyl-coenzyme A dehydrogenase) when he was just a newborn, his mother, Kayla Torti, told ABC News.

The rare genetic disorder means Owen's body is unable to break down certain fatty acids into energy. As a result, he must eat nearly constantly or else his body would start to break down key muscles in the search for energy.

"If we had breakfast and skipped lunch [our body] would use up the energy from breakfast ... [to] break down stored fats for energy," Torti explained. "Owen’s body cannot do that. It breaks down his muscles and can cause problems with kidneys or liver or heart."

Despite the genetic illness, Owen still looks and acts much like any other toddler, Torti said.

"He wants to act like a normal 2-year-old and he wants to go and play and run around as long as the other 2-year-olds," Torti said. "Unfortunately, we have to have him sit down and take little breaks. ... He doesn’t know how to pace himself."

The National Institutes of Health does not have a firm estimate for how often the disease appears in the U.S. but says in Finland it appears in about 1 of every 62,000 births. Torti said she was told by her doctors that the condition can be related to a syndrome called HELLP syndrome, which can affect a pregnant woman's red blood cells, liver enzymes and platelets.

Since Owen needs to constantly be fed, he doesn't quite understand the purpose of a meal, Torti said.

"From feeding Owen so frequently, he has a lot of oral aversion to eating," Torti explained to ABC News. "Solid foods is so hard for him right now."

Torti said she is hopeful that as Owen grows, he'll be able have a fairly normal life as he learns what his limitations are.

There’s not a lot known about how this will affect him in future and what he will and won’t be able to do, Torti said.

"We’re hopeful that he can manage and he’ll know his body enough,” she said.