Owen Torti, a 23-month-old toddler from Georgia, was born 9 weeks premature. His mother, Kayla Torti, underwent an emergency C-section following the diagnosis of HELLP syndrome, a condition that elevates her liver enzymes, lowers platelets and breaks down red blood cells during pregnancy. Owen was born weighing only 3 pounds and 14 ounces.
During his first few days of life, Owen was diagnosed with a rare metabolic disorder that prevents his body from converting fats into energy. The condition is called long-chain 3-hydroxy acyl-coenzyme A dehydrogenase or LCHAD. Since the body is unable to turn fats into energy, the body goes after muscles for energy.
At 16 months, a gastronomy tube was used to deliver Lipistart, a special medical formulation used to help with feeding, directly into Owen's stomach. In the span of 20 months, Owen has been admitted 12 times because of his condition.
To stay healthy, Owen has to eat every hour like clockwork to prevent his body from breaking down his own muscles. Left untreated, LCHAD can lead to seizures, coma, breathing problems and even death. Now a toddler, Owen looks and acts like normal toddlers his age despite suffering from the rare genetic illness.
"He wants to act like a normal two-year-old and he wants to go and play and run around as long as the other two-year-olds. Unfortunately, we have to have him sit down and take little breaks. He doesn't know how to pace himself," said Kayla Torti.
Owen's mortality depends on his food intake and since he needs to be fed constantly, the toddler has yet to comprehend the meal's purpose. Most toddlers have shown oral dislike towards feeding and since Owen needs food constantly, he had begun to show oral aversion.
Kayla remains optimistic that his son will have a normal life in the future when he begins to understand the purpose of the regular and constant meals and when he learns his limitations.
Kayla and Tyler Torti have set up a crowd-funding platform to help them with Owen's medical bills. They are hopeful that their toddler son can participant in Baylor University's intensive feeding program.
