WASHINGTON — Congressman Eugene Vindman (Va.-07) welcomed families from Virginia’s Seventh District and the Commonwealth whose children are suffering from Nonketotic Hyperglycinemia (NKH).
In the Seventh District, Shannon and Christopher both work full time, have private insurance, and are proud parents to three boys, one of them being Luka who suffers from NKH. Despite having private insurance, their family needs Medicaid coverage to support Luka’s 18 daily medications, home care, and resources. They should be focused on spending time with Luka — not wondering what is going to happen to their nearly 3-year-old son’s Medicaid.
Tomorrow, on May 2, 2025, Vindman will introduce a resolution to commemorate NKH Day, bringing awareness to this disease and highlighting the importance of Medicaid.
Vindman spoke about NKH, Shannon and Luka, and Eddy and Jackie on the floor of the U.S. House to bring awareness to the rare NKH disease and the pressing need to strengthen, not cut, Medicaid. MORE PHOTOS HERE.
“My constituent Shannon and her family should be focused on enjoying time with Luka, not wondering if their Medicaid will be ripped away because extreme Republicans want to fund tax breaks for billionaires,” said Vindman. “After meeting Shannon, Christopher, and Luka, I heard how their Medicaid funds 18 medications, at-home care, and more for Luka and their family, it is unconscionable that Republicans would continue to fight for Medicaid cuts – and yet, they continue to prove their interest is NOT in fighting for working families. This story is similar to many hardworking families across our country who are doing everything right but not able to get ahead. I will always fight for folks like Shannon, Christopher, and Luka.”
“For families facing the challenges of a rare disease, Medicaid isn’t just a health insurance program — it’s a lifeline. It provides access to vital specialists, treatments, and support that would otherwise not be possible. Prior to Luka’s diagnosis, we were a family that worked and had commercial insurance; we never knew how much would not be covered for a child facing a terminal diagnosis,” said Shannon, mother to Luka and resident of the Seventh District of Virginia.
“Whether a rare disease affects one child or 100,000, every patient deserves equitable access to care, research, and the hope of a cure. The rarity of a condition should never determine the value of a life. Timely and accurate diagnosis is critical — it’s often the first step toward effective treatment and support. NKH Crusaders will continue to advocate for greater awareness, accelerated diagnoses, and advancing treatments and research development across the board to ensure that no family is left behind,” said Kristin Archibald, Founder and Executive Director of NKH Crusaders.
“Our children are our life. Each and every day is a struggle for them and their families. So many precious children have been lost to this terrible disease. Please come together each and every May to support them in life and remember those that have lost so much. Without love, we are lost,” said Eddie, father to Jackie, resident of Virginia, and veteran.
Background
NKH is a rare, fatal disease that prevents bodies from breaking down glycine with only 500 known cases worldwide. Kids are often born with this disease and will suffer their whole lives, likely passing before five years old.
Shannon joined Vindman’s February tele-town hall to share the story on her family and Luka making clear that their family could not get by without the support of Medicaid.
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