Recognizing Nkh Awareness Day

Floor Speech

BREAK IN TRANSCRIPT

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.

BREAK IN TRANSCRIPT

Source