Nearly housebound by a rare set of genetic disorders, Tristan has seen the world thanks to his ESA and virtual reality

Feb 4 2024 • By Roger Mooney

Tristan Drummond was born 10 weeks premature with one kidney and enough genetic disorders that doctors gave him a 50/50 chance to turn 1.

He had his first surgery when he was 2 days old and has far exceeded that dire prediction. He will turn 12 in June.

But his lungs are filled with scar tissue, and his left lung tends to collapse. He’s susceptible to colds that lead to pneumonia, and that leads to more scar tissue on his lungs.

Also, Tristan is on the autism spectrum.

“The cherry on top,” said his mom, Danielle.

Tristan shows off his Quest 3, the mixed reality headset he purchased with his Education Savings Account.

Tristan is homeschooled, and unless he’s going to a doctor’s appointment or to the grocery store with his mom, he spends nearly all his time inside the family’s Fort Lauderdale home. But thanks to the Family Empowerment Scholarship for Students with Unique Abilities (FES-UA), managed by Step Up For Students, Tristan’s world virtually spans the globe.

“The scholarship has allowed him to actually have a life,” Danielle said. “It's hard for kids like him because they don't have a lot of outlets. They need those relationships with other kids, and that is a safe way for him to do it. He has friends that he plays with online.”

The scholarship operates as an Education Savings Account (ESA), which allows Tristan to spend its funds on curriculum and other approved education-related expenses. Art supplies have topped that list during this school year.

The ESA also allows for electronics, which have shaped Tristan’s education and enabled him to have a social circle of about 50 friends whom he’s never met physically yet plays with nearly every day.

“This scholarship is a godsend,” Danielle said.

Tristan was born with VACTERL association, which stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities. Not everyone with VACTERL has all six conditions. Tristan has three.

“It's a nice little combo of rare diseases that just sort of all landed on one kid,” Danielle said.

He was born without a section of his esophagus and a tethered spinal cord.

“He had eight surgeries before his fifth birthday and so many procedures I’ve lost count,” Danielle said.

Tristan had back surgery when he was 6 to correct his spinal cord. That’s when Danielle and her husband, Ashley, used the ESA for a large-screen TV and virtual reality equipment to help Tristan relearn how to walk. They quickly realized the benefits the ESA could have on Tristan’s life.

Tristan has learned to make videos with his Stickbots.

Virtual reality has been used for nearly 25 years to help people on the autism spectrum learn to communicate and develop job skills. It has helped Tristan improve his cognitive and gross motor skills through occupational and physical therapy. It helped him increase his attention span and developed his hand-eye coordination and core strength. He’s learned how to count and how to exercise.

It has also taken him around the world.

Tristan landed on the moon with the Apollo 11 crew, swam with sharks off the Great Barrier Reef in Australia, and visited Epcot Center and the Smithsonian Institute in Washington, D.C.

He’s studied astrophysics and Van Gough and knows everything about the tardigrade, an eight-legged micro-animal that lives in water.

The online game Roblox makes Tristan aware of how his body moves because it tracks a player’s body, eye, and facial expressions. He learned to work with teammates by playing the video game Beat Saber. Gorilla Tag allows Tristan to play tag with his friends, something he could never do in the real world without the risk of getting sick.

Tristan had trouble sleeping at night until Danielle came across Liminal VR, which stimulates different parts of your brain.

“He does his five minutes on there, takes his bath, then he goes to sleep and doesn't have a problem,” Danielle said.

Tristan lines up his Stickbots to make another video.

With Minecraft, Tristan has built an entire neighborhood, complete with houses and people living in those houses. He makes videos with his Stickbots and Godzilla figurines.

Everything is relevant to her son’s education, Danielle said. Tristan is learning to code and make videos. He’s learning science and math. Some might see it as unorthodox.

“But he doesn’t fit in a box,” Danielle said.

Tristan responds to electronics. To not have that would be a lost opportunity when it comes to his education.

“This is where it changes into something that can be usable for a career later,” Danielle said. “For kids like Tristan, technology is going to be where their careers, if they have them, are going to be because they have an aptitude for it.

“You hope for him to have a productive life and hopefully be a contributing member of society, and the future of our society is electronic.”

Roger Mooney, manager, communications, can be reached at [email protected].

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Roger Mooney