[Congressional Record Volume 169, Number 150 (Monday, September 18, 2023)]
[House]
[Page H4356]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




      SHEDDING LIGHT ON PYRUVATE DEHYDROGENASE COMPLEX DEFICIENCY

  (Mr. RUTHERFORD asked and was given permission to address the House 
for 1 minute and to revise and extend his remarks.)
  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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