Rare LCHAD Disorder Means Two-Year-Old Must Eat Every Hour
November 9, 2015
To all the new parents struggling to feed their newborn every two to three hours, imagine having to do it every hour—for years. Such is reality for the Torti family in Tennessee, whose son, Owen, now 23 months, was diagnosed with the rare metabolic disorder LCHAD (long-chain 3-hydroxyacyl-coenzyme A dehydrogenase) as an infant. Because his body doesn’t break down certain foods into energy, Owen is at risk of his body breaking down his muscles for energy if he goes without food for more than an hour, reports ABC News. “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,” mom Kayla Torti says. “Unfortunately, we have to have him sit down and take little breaks. He doesn’t know how to pace himself.”
LCHAD, which was first diagnosed in the 1990s, is so rare it only affects one in every 100,000 newborns and wasn’t even on newborn screening tests until six years ago, reports WKRN Nashville. To help with medical bills, two teams recently ran the Ragnar Relay through Tennessee wearing “All in for Owen” shirts and raised $15,000. Owen was born nine weeks premature, according to the family’sYouCaring page, and has been hospitalized 12 times in 20 months, typically when a metabolic breakdown causes breathing problems and seizures. If not treated, he could slip into a coma and even die. With the constant eating, his mother says he’s developed an oral aversion to food and is on a special medical formula called Lipistart, administered largely through a feeding tube. The Tortis have a 25% chance of having a second child with the same disorder. (These parents are losing both their sons to a rare brain disease.)
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