Raleigh County, WV (WOAY) – Meet Seth Steele and his mother, Jessica Stacy. They are a normal mother and son duo, but a pair that is stronger than most.
You see, Seth has a rare brain disease. Jessica states, “It’s a genetic terminal brain disease. H-ABC Leukodystrophy. There are, as of right now, three hundred cases worldwide.”
I asked Jessica to explain it a little bit further.
“It’s a disease of the brain that affects the myelin and destroys myelin and affects how the bone grows. And they eventually lose all abilities, even mobility, and even the ability to swallow. So it pretty much takes everything from them.”
Now, while there is no cure, there is a treatment. And this impacts the family deeply. Jessica explains how the treatment works.
“Yes. It’s not a treatment specific to this disorder, but it’s an investigational gene therapy. And so it’s an infusion that they are treating other neurological conditions with it. And they have just started treating patients with it as well. He will basically just get a shot in his spine, but he’ll have to be put to sleep with anesthesia, which is what’s actually going to be the most expensive with all of these treatments that he’ll have to get every 2 to 3 months.”
However, they need your help.
To help out, you can donate to their GoFundMe with the link here.
Every penny helps, and if you cannot donate anything, sharing the link is appreciated as well.
Jessica explained that she will keep everyone informed on their journey. “I’ll be posting updates every step of the way of these treatments. And if you all want to be a part of our journey and watch this miracle unfold,”
You can also follow Seth and Jessica on Facebook or TikTok to stay with them every step of the way.
Reporting in Raleigh County, I am Tygra de Mello, Newswatch.
