As Miller Thweatt, a six-year-old with Leigh Syndrome, is brought into the room at West Texas Rehabilitation Center, his eyes widen as well as his smiles. An adapted ride-in car looks back at him. As bravery and strength exudes from him, people around him are inspired and grateful to be a part of his life.
Leigh syndrome is characterized by attacks on the brain’s mitochondria (cells that produce energy) causing progressive loss of mental and movement abilities. It is an extremely rare, severe neurological disorder that usually becomes apparent in the first year of life and has no cure. Miller was diagnosed five years ago on February 28, which happens to be Rare Disease Day.
Jacque Thweatt, Miller’s mom, said he has continued to reach milestones many said he may not reach.
“When he was diagnosed at fifteen months in February 2018, we were told he may not see two years old and probably would not see three years old,” Thweatt said. “He is soon to graduate kindergarten and has made lots of friends. He loves to be outside. He loves Mickey Mouse. And he teaches everyone around him to make the most of each day with his persistence and joy.”
From birth, Miller was delayed and routinely failed to reach his developmental milestones, his family and pediatricians started to worry. Doctors sent him to a neurologist in Dallas. He eventually was diagnosed after experiencing a rare type of seizure and blood work was done.
“We had a blood test done on Miller, Josh and myself to conduct a genetic test and found I am a genetic carrier of the mutation in the ATP6 gene,” Thweatt said. “Miller is 97% affected by this mutation.”
Miller’s parents said they have never let his syndrome keep him from life experiences. They connected with other parents and children fighting the same battle and made their home more accessible for Miller. Miller is nonverbal, but he is able to communicate through an augmentative or alternative communication device (AAC), called the Talk To Me Technologies EyeSpeak.
“He’s able to look at the screen, similar to an iPad, and the technology tracks his eye movement and makes selections based on his movements,” Thweatt said. “It then verbalizes his selections to communicate his wants or needs.”
Lory Chrane, instructor of communication sciences and disorders and undergraduate program director, first met Miller when her daughter, Sydney Chrane Wilde (‘19), who is now a second year occupational therapy student at the University of Texas-El Paso, was completing her clinical observation at West Texas Rehab Center as a pre-OT student at ACU.
She overheard Miller’s mom saying she would like an adapted car for him. Chrane quickly put together a team and a Lightning McQueen car was made. Recently his mom reached out to Chrane to see if she could collaborate with a team that would adapt a bigger one for him.
“Miller is all smiles,” Chrane said. “He is a joy and light to everyone who meets him and is the hardest worker. We are so thankful we can serve him and his family this way.”
After learning about Miller, Chrane reached out to Monique Marquardt, associate professor of practice in the Department of Engineering and Physics. She presented the idea of modifying a ride-in toy car for Miller to the ENGR 390: Junior Clinic class that would allow him to move in a more enjoyable way and play with others.
Katelyn Graham, junior mechanical engineering major from Roswell, New Mexico, said preparations began in January.
“Throughout the process of the class, we have done a lot of preparation,” Graham said. “This included a period of coming up with possible solutions, combining our best ideas into one project, solidifying our design, making specific designs and material lists and finally building. During building there has been some redesigning and some adjustments but the car is now almost finished and is looking great.”
Adaptations to the toy car include making safety adjustments to the seat to better support his body as well as adding a simple joystick that he will be able to operate on his own in replacement to the original steering. A mount for his augmentative or alternative communication device was also added so that he can use it while he rides.
Caleb Camacho, junior mechanical engineering major from Waco, said their team of six has been split up based on their engineering concentration.
“Three electrical engineers, two mechanical engineers, and one general engineer,” Camacho said. “The electrical engineers are working on the controlling part of the car – using a joystick to control the car’s driving functions. The mechanical and general engineers are working on the communication device mount, seating and safety adaptations.”
Miller loves Disney – more than even most other kids. Special details were added to his ride-in car to make it personalized for him. A Mickey Mouse decal with Miller’s name was added to the hood and side of the car. As well as this, a personalized “Miller” license plate will be added. The final personalized detail is Mickey Mouse ears added to the back of the car.
Makayla Moulton, junior general engineering major from Burleson, said Miller’s love for Mickey Mouse is evident.
“The team wanted to personalize the car for Miller and make it his own,” Moulton said. “I made the designs at home with my own Cricut machine and I will also be adding a license plate on the back of the car with his name as well.”
Miller’s middle name is David. Thweatt said Miller’s story reminds them of the Biblical story, David and Goliath.
“We often refer to the challenges he faces as Goliaths and he the David,” Thweatt. “He has taught us all so much about life, love and how much our God takes care of His children.”
The students received $1000 from SGA, and the remaining funds were donated to the Cure ATP6 Fund. It is hoped that this ride-in car and joystick will help prepare Miller to be trained for a motorized wheelchair in the future. Miller received the ride-in car on May 10.
“This car enables him to spend more time outside, interact with friends, work on his hand-eye coordination and engage new learning pathways in his brain that will only benefit him,” Thweatt said. “His jeep is awesome!”
To follow along with Miller and his family, read Thweatt’s blog, GOLIATHS AND GRACE, Life with Miller David and follow him on Instagram @MulligansforMiller.
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