LYNCHBURG, Va. (WSET) — Four-year-old Charlie Townes is facing a challenging battle against a rare neurological condition known as KCNB1 disorder.
His grandmother, Agnes Rucker, described his condition, saying, “Just like a floppy little faun at times. It’s really been hard to see that, but then you see the breakthroughs like now, and just pray that it keeps getting better.”
Dr. Erika Axeen, a pediatric epileptologist at the University of Virginia, has been treating Charlie since he was two years old.
“Unfortunately, Charlie’s seizures have become extremely difficult to control, which is typical for this disorder,” said Dr. Axeen. “So we’ve had the frustrating experience of trying and failing multiple anti-seizure medications, and despite having tried multiple medications, he continues to have frequent seizures.”
Dr. Axeen noted that KCNB1 disorder is rare, with just over 100 cases reported in the United States.
The disorder affects children’s behavior and movements, can lead to intellectual disabilities, and causes seizures.
For Charlie, these challenges have been significant.
SEE ALSO: Jefferson Forest student scheduled for heart surgery after being on transplant list
His father, Clayton Townes, expressed his concerns, saying, “It’s a lot so because, I mean, like I said, he has no balance, and you’re scared he’s gonna fall, hit his head, or fall and hurt himself.”
Despite the lack of a cure, a new procedure involving the implantation of a vagal nerve stimulator offers hope.
Dr. Axeen explained, “Repeated stimulation over the course of months and years, it can actually reduce the frequency of seizures, and that pairs with medications to help control the seizures.”
Clayton Townes is hopeful about the potential benefits of the VNS.
“I’m hoping that that’ll come back his emotion. You know, without the medicine being so, you know, having to have so much medicine, that’s what I’m thinking. But the VNS might help out,” he said.
Rucker continues to have hope as well.
“There have been tears and just asking God to intervene to give him some normalcy,” Rucker said.
From treatments to traveling to appointments, this has been a financial strain on the Townes family.
If you would like to donate to help, you can click this link.
Source link
