Shannon and Christopher Seymour may not have a lot more time with their son Luka.
The 2½-year-old Spotsylvania County boy has nonketotic hyperglycinemia, a rare and fatal genetic disorder known as NKH. His body doesn’t break down the amino acid glycine, which means that without the proper treatment, it constantly builds, causing such problems as seizures, lethargy and feeding trouble.
To lower his glycine levels, Luka makes use of 18 daily medications, home health support and other specialized resources, which are covered by a mix of private insurance and Medicaid.
That arrangement could be at risk, though, if Congress cuts Medicaid funding during federal budget talks, according to Rep. Eugene Vindman. So the Democrat, whose 7th District includes the Fredericksburg area, invited the Seymours to Capitol Hill on Thursday and spoke on the House floor about NKH. He also plans to introduce a resolution Friday to commemorate NKH Day, bringing awareness to the disease and highlighting what he says is the importance of Medicaid.
“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 greedy billionaires,” Vindman said in an announcement of the awareness efforts.
Children who have NKH can suffer their whole lives, likely dying before age 5. The illness occurs in only one in every 76,000 births. There are about 500 kids worldwide with it, including four in Virginia.
Vindman met Shannon Seymour when she was one of almost 7,000 people who attended a tele-town hall the congressman held in February. The Seymours then visited Vindman’s Fredericksburg district office last month.
In an interview with the Free Press on Thursday, Vindman underscored that the Seymours work full-time but still need Medicaid as a backup.
“You know, the narrative about some of these support programs that provide a hand-up, not a handout, is that, you know, people are lazy, they’re not working, and that is just not the case,” he said.
So, Vindman said, the Seymours’ story is one that the 7th Congressional District — and all of America — needs to hear.
Raising awareness is important for NKH sufferers and their families, said Shannon Seymour, who has three sons total.
“NKH is what’s referred to as an orphan disease, and what that means is all of the funding falls heavily on the families’ shoulders, because none of the pharmaceutical companies want to pick us up because there’s so few of us there’s no money to be made,” she said. “So any of the funding, it all comes from the families and their support systems.”
Last year, Seymour said, NKH families alone raised $25,000 to fight the illness, and that figure was matched by an anonymous donor.
Holly Burgess, vice president of the Boston-based NKH Crusaders foundation, was also in Washington on Thursday, and she said the faster children with NKH can get to a care plan, the better.
She also pointed to another reason awareness is so vital: Even medical professionals often don’t know about the disease.
“The doctors don’t know what they’re diagnosing,” she said.
