Tobias' World
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Lylee Gibbs
Team Eisert
Tobias Edwards, 10, loves loud music and loud toys. He holds toys up to his ear as they play soft songs, occasionally cracking a grin. He is the only son of Cindi and Josh Edwards.
Tobias is one of about 250 people in the world with ATR-X Syndrome, a rare genetic disorder caused by mutations in the ATRX gene located on the X chromosome that affects males. Tobias, born under 3 lbs, spent 86 days in the NICU before coming home and didn't get a diagnosis until he was more than a year old. Symptoms include delayed motor skills and intellectual disabilities.
Between his family and friends, he is known as “Super-T."
“Since he was born early and was so little, he had to fight hard from the start,” Cindi said. “Ever since then, we knew he was a tiny superhero.”
A fifth grader, Tobias’ routine is filled with therapy, school and quiet afternoons at home. His world is filled by mom, teachers, therapists, nurses and his dad, who makes him laugh the most.
To make it through his routines, Tobias uses leg braces, electric chairs and lots of hands to carry him through the day. At home, the braces can come off and the family spends time together doing things like blowing bubbles until the sun gets tired and the bubble machine runs out of soap. “I love you more than anything in the world,” his mother Cindi whispers to him.
Tobias Edwards, 10, watches as bubbles float around him while he sits in the driveway with his nurse, Bri Rollhaus, and plays with a bubble machine.
Cindi Edwards, Tobias' mother, holds her son in her arms before carrying him to his wheelchair as they get ready to leave for therapy. Tobias stays home from school every Tuesday to attend therapy in the afternoon in Eureka.
Cindi kisses Tobias on the forehead while they lay on the couch together.
Bri administers medication into Tobias' feeding tube before feeding him dinner. Bri has been with Tobias for nearly two years as his daytime nurse.
Josh Edwards, Tobias' father, tickles his son.
Alicia Mohesky, an occupational therapist, holds Tobias' hand and guides him to write the word "apple" while doing an apple-themed craft in therapy.
Amanda Bradley, a paraprofessional at Central Elementary School, grabs onto Tobias works with Tobias on reading letters during school.
Tobias dozes off as he gets his school picture taken early in the morning. His mom pokes him awake.
Cindi carries Tobais from his wheelchair into his carseat as they get ready to leave for therapy.
Tobias balances on his own on top of a horse during horse therapy at Exceptional Equestrian of the Equine Valley. Edwards set a personal record of 80 seconds balancing on his own.
Tobias wears a superhero cape with the symbol of his nickname, "Super-T," as he sits in the driveway with Bri.
Josh hands Bri a piece of a cookie while the family sits in the driveway, watching Tobias play with a bubble machine.
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