[Congressional Record Volume 171, Number 73 (Thursday, May 1, 2025)]
[House]
[Page H1788]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                     RECOGNIZING NKH AWARENESS DAY

  (Mr. VINDMAN asked and was given permission to address the House for 
1 minute and to revise and extend his remarks.)
  Mr. VINDMAN. Mr. Speaker, today, I rise to recognize May 2 as 
Nonketotic Hyperglycinemia Awareness Day.
  NKH is a rare genetic disorder, and there are only 500 kids in the 
world living with it, four of them calling the Commonwealth of Virginia 
home.
  Today, I am proud to be joined by one of these incredible kids, my 
constituent Luka, and his family.
  Jackie and her dad, Eddy, are also important advocates in Virginia 
dealing with this disease.
  At one of my townhalls, Luka's mom, Shannon, shared their story with 
me. It was a story where Medicaid was at the center.
  Without reliable Medicaid, Luka would not receive his 18 daily 
medications, at-home care, and other resources he needs. His mom and 
dad, Shannon and Chris, work full-time jobs, and Medicaid is backup 
insurance.
  By establishing May 2 as NKH Awareness Day, we raise awareness for 
this devastating disease and recommit to fighting for a reliable 
Medicaid. That is because every family should be focused on spending 
time with their loved ones and not worrying about healthcare.

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