Vindman Recognizes Fredericksburg-Area Family Living with Rare Genetic Disease...
... and calls on Congress to protect funding for Medicaid, which the family relies on to provide for their son's care.
By Adele Uphaus
MANAGING EDITOR AND CORRESPONDENT
Email Adele
Shannon almost didn’t attend the recent telephone town hall hosted by Congressman Eugene Vindman.
“I was going to go to bed,” said the Fredericksburg area resident, who’s the mother of three boys and works part-time.
She’d never reached out to her Congressional representative before, either, but said she felt that Vindman “would hear me and care.”
One of Shannon’s young sons, Luka, has Nonketotic Hyperglycinemia (NKH), a rare genetic disorder that necessitates 24/7 in-home nursing care and 18 medications. Shannon and her husband Chris rely on Medicaid to supplement their private insurance and enable them to provide Luka with the supports and medical equipment he needs.
“Medicaid and everything Luka needs and deserves sits near and dear to my heart and I can’t just sit here without trying to fight for it,” Shannon, whose last name is being withheld to protect her family’s privacy, told the Advance Thursday morning.
The budget resolution passed this spring by the Republican-controlled House of Representatives calls for the Energy and Commerce Committee, which oversees Medicaid, to cut $880 billion over the next 10 years. The resolution does not mention Medicaid specifically, but according to the Congressional Budget Office and other analysis, it is not possible to cut that amount without cutting Medicaid.
Shannon was one of 7,000 constituents of Virginia’s 7th Congressional District who were on that particular tele-town hall, and she got a chance to ask Vindman a question about Medicaid.
“Her story—I just found it so compelling,” Vindman told the Advance on Thursday. “Given what we’re seeing in Congress right now—these proposed cuts to Medicaid and these critical support programs for America’s families.”
Vindman said there is a narrative that programs like Medicaid constitute “fraud, waste, and abuse” and that they “service people who are not deserving.”
“But when Shannon told me her story about Luka and fact that she and her husband both work and have primary insurance [as well as] Medicaid, which provides for the 24-hour care and the 18 medications he takes—they’re a hardworking family, and the narrative you hear from my extreme conservative colleagues doesn’t make sense,” Vindman said.
During a more in-depth conversation with Shannon later on, Vindman learned more about NKH, including the fact that there are only 500 known cases worldwide—and that four of them are in Virginia.
Because it is so rare, there is no funding for research, so Shannon and other families living with the disease fund their own research through a foundation established in 2017.
In Congress on Thursday morning, Vindman recognized Shannon, Luka, and the rest of their family, and introduced a resolution to commemorate May 2 as NKH Awareness Day, bringing awareness to the disease and highlighting the importance of Medicaid in supporting families who live with it and other rare diseases.
Shannon said that before Luka’s diagnosis, she and her husband had no idea how many treatments and therapies their commercial insurance would not cover.
“For families facing the challenges of a rare disease, Medicaid isn’t just a health insurance program — it's a lifeline,” she said. “It provides access to vital specialists, treatments, and support that would otherwise not be possible.”
Without Medicaid, Shannon said, Luka would lose “all of his nursing, all of his therapy services, all of his medicines, and all of his equipment.”
“The wheelchair he’s sitting in now, that costs $8,500,” she said. “And all that is just the start of what we’d lose.”
The end result, Vindman said, would be this: “Shannon would lose Luka, and Luka would lose his life.”
Support the Advance, and Receive 20% Off an Annual Subscription
For a limited time, you can support the Advance and get 20% off an annual subscription (new subscribers only). Your contribution directly supports the best, most-experienced local journalists in our area. We cannot do this work without you!
Local Obituaries
To view local obituaries or to send a note to family and loved ones, please visit the link that follows.
Support Award-winning, Locally Focused Journalism
The FXBG Advance cuts through the talking points to deliver both incisive and informative news about the issues, people, and organizations that daily affect your life. And we do it in a multi-partisan format that has no equal in this region. Over the past year, our reporting was:
First to break the story of Stafford Board of Supervisors dismissing a citizen library board member for “misconduct,” without informing the citizen or explaining what the person allegedly did wrong.
First to explain falling water levels in the Rappahannock Canal.
First to detail controversial traffic numbers submitted by Stafford staff on the Buc-ee’s project
Our media group also offers the most-extensive election coverage in the region and regular columnists like:
And our newsroom is led by the most-experienced and most-awarded journalists in the region — Adele Uphaus (Managing Editor and multiple VPA award-winner) and Martin Davis (Editor-in-Chief, 2022 Opinion Writer of the Year in Virginia and more than 25 years reporting from around the country and the world).
For just $8 a month, you can help support top-flight journalism that puts people over policies.
Your contributions 100% support our journalists.
Help us as we continue to grow!
This article is published under Creative Commons license CC BY-NC-ND. It can be distributed for noncommercial purposes and must include the following: “Published with permission by FXBG Advance.”