JACKSONVILLE, Fla. — The parents of four-year-old Harlow Higbee say they fear a treatment that has dramatically improved their daughter’s quality of life could soon be cut off for her and other children like her.

Harlow was born with an ultra-rare genetic mitochondrial disorder. Her parents say the medicine she has been taking, dichloroacetate (DCA), has been life changing.

"The diagnosis is pyruvate dehydrogenase complex deficiency, or PDCD for short,” Kim Higbee, Harlow’s mother, said.

"Basically the main issue is she can't process carbohydrates,” Rick Higbee, Harlow’s father said. “Instead her body basically metabolizes it into lactic acid."

Harlow was diagnosed with the life-threatening disease at just nine months old.

"Harlow, she's four, and the statistics for PDCD — 90% co

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