Shedding Light on Pyruvate Dehydrogenase Complex Deficiency

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Mr. RUTHERFORD. Mr. Speaker, I rise today to shed light on pyruvate dehydrogenase complex deficiency, commonly known as PDCD.

This incurable and extremely rare mitochondrial metabolic condition, which manifests at birth, prohibits patients from properly transforming carbohydrates into energy, and instead turning them into lactic acid that causes painful seizures and developmental delays.

I recently met with Rick and Kim Higbee, a family in Jacksonville, Florida, who have experienced the challenges of PDCD firsthand. Their daughter, Harlow, pictured beside me, began to show signs of PDCD as an infant. As any parent knows, when there is something wrong with your child, you will move Heaven and Earth to get answers and provide for their care.

Sadly, since PDCD does not currently appear on infant screening lists, the Higbee family waited 9 painstakingly long months before they had a name for Harlow's condition and were able to begin treatment.

Thanks to the doctors, nurses, and specialists at UF Health in Jacksonville and her own fighting spirit, 3-year-old Harlow has defied the odds.

This week, World Mitochondrial Disease Week, I am proud to join the Higbee family and thousands of others in advocating for PDCD to be added to the infant screening list and for additional research funding to go toward finding a cure. Early detection and diagnosis can mean the difference between life and death for more than 15 million children.

On behalf of Florida's Fifth Congressional District, I am committed to ensuring that families in our community like the Higbees are supported in their fight to eradicate this condition.

God bless Harlow and all of our children living with PDCD.

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