PARAGOULD, AR (KAIT) – One little boy has been defying the odds for more than a decade despite having a rare illness. Now, he's getting closer to doing something he's only done a few times, attend school.
Tonya Thomason said her 12-year old son, Zachary, is diagnosed with X-linked myotubular myopathy, a rare disease only affecting males. She said Zachary is testing a specially designed robot, controlled with a computer, to go to school.
Twelve years ago, Thomason said doctors advised her to remove life support when Zach was five days old. She declined. Since then, the family has been fighting to provide a good life for Zachary.
"He is bed bound. He is tube fed. He is ventilator dependent. We lift him as if he were a newborn. He has very little muscle strength," said Thomason.
In 2000, Region 8 News talked with the Thomason family about Zachary's disease. He was diagnosed with a disease so rare, only one other case was reported at the time. Zach's older brother, Matt, died shortly after birth. At the time, doctors linked the disease to the x-chromosome. Zach's sister, Amanda, was born healthy.
"Nineteen years ago, with our first child, we had no clue that we would have health issues. He (Matt) was born premature, airlifted to Arkansas Children's in Little Rock and was never able to get home. He lived four months and five days. This month (May) marks the 19th year," said Thomason. "I got to hold him several times and our family was there when he passed away and we'll never forget. We'll never be the same. We didn't expect to have more children."
Thomason said Amanda had her own muscle issues.
"Not as extreme as her older brother. When Zachary was coming along, we knew from the get go. We went to Little Rock and got a motel room, stayed put so we wouldn't have to airlift if he came early, which he did," said Thomason.
Click here to read more about X-linked myotubular myopathy.
Thomason said Zachary has a grasp of his health. She said he never complains about his situation, although he has asked questions.
"Nothing gets him down. He's happy. He loves to talk and sing. He plays computer and Playstation. He just loves anything that has buttons and controls and he's always happy," said Thomason. "He's just processing things in his own little way and he's just the happiest child you'll ever meet."
Thomason said her son hasn't attended a class since the first grade, when he only got the chance to go to a couple classes.
"He's never had real friends. One of his teachers had a little boy, Ms. Stacy was her name, and when she'd come over, her and her little boy would visit and that was his buddy. We don't get to see him anymore," said Thomason.
Starting next year, Zachary will be able to use a VGO robot, designed to see and hear what's going on in the classroom. The robot also provides Zach with the ability to move from room to room, participate in classroom discussion and chit-chat with other students in the hallway.
"We've provided services with Zachary since he was a preschooler and tried to do what we could for him because he's a smart little boy. He's got lots of interests," said Kelly Colbert, Special Education Director for the Paragould School District.
"This (robot) all came from our technology department. They did an amazing job finding this piece of equipment for us," said Colbert.
Colbert said Vernon DuBar was in charge of the project to install the robot and find a way to get Zachary more involved in school. DuBar said he contacted a vendor, VGO, who specializes in video conferencing equipment. After the district demoed the robot, it purchased the robot for roughly $5,000.
Colbert said after buying the robot, he worked with AT&T and the Arkansas Department of Information Systems to install a network connection between Zachary's home and Oak Grove Middle School.
Zachary can control the robot from his home through a computer, which is equipped with a webcam and microphone. The user-interface closely resembles a video game system.
"I was told the other day that Zach got to sit in on a science project for the first time, and the speech pathologist was over there with him. They actually had to turn down the volume because Zach wanted to keep interrupting the class because he was so excited about being there," said Colbert. "We understand that he's not going to feel like he can do this to a regular schedule seven hours a day, but this will increase his time greatly. We send people. We send staff out there four hours a week."
The project was of no cost to the Thomason family, Colbert said.
"He was proud. He said that he saw the classroom and the robot moved. It was like he was there. He was just very proud of himself and felt very grown up and part of something, part of something in the classroom," said Thomason.
Thomason said her son just wants to be like everyone else.
"We put him on a swing set just one time and it was a challenge. He told us he was like the other boys and girls and that was in our lap, not on the swing," said Thomason. "When he wakes up and he says, hi momma, I just love that. His sweet little voice that I didn't hear for seven years, and now he talks enough that sometimes you just want to shush him a little bit."
Thomason said she believes her son has a future in a career with computers or architecture. She said while his body is an obstacle, his mind is sharp.
"Once he has more access to school, he's going to really thrive. It's so hard to turn the pages of a book. He cannot write. He can't do the math because he needs manipulatives to be able to work with. He can't hold his little fingers up to count or use a pen to write with," said Thomason. "He has all the little dreams and make believe and goals in his little world that everybody else does. He's just limited to his world."