Billings, Montana – James Thomas, age two and a half, was identified as having Infantile Epileptic Encephalopathy, which is brought on by a mutation in the STXBP1 gene.
It’s the gene responsible for creating the protein in the brain that facilitates your neurons firing,” explained his father, John. “That protein sits between your neuro-connectors and that’s what lets the signals and the pathways communicate.”
An extremely uncommon illness that doctors are still learning about. The extent of what is known varies rather dramatically. James has linguistic and mobility issues. The equipment used to improve James’ and others’ quality of life is highly specialized, which also means that it is usually very expensive.
“He’s at the point now where he’ll either bunny hop or take a few alternative steps,” said his mother Katy. “I’ve never seen him take more than four or five at a time. TREXCO comes with an engine and a little motor with robotic legs that can be programmed from a tablet so you can take him for a walk with his gate trainer and those robotic legs you actually get fluidity in those steps.”
The cost of that walking aid is in the tens of thousands. The Thomas family also spent their own money on a tablet that can detect his line of sight. James is now able to have simple exchanges with his family.
The Thomas family holds fundraisers for James to help with the expenses. On Saturday, April 29th at 7 p.m., a fundraiser will be held at Arcade Sporting Goods & Bar in Roundup. There will be bingo, food, Jason Larson’s music, a silent auction, and more.
