Obituary: Rex Timko / Nine-year-old battled brain disease
Nov. 24, 2007 - Dec. 16, 2016
December 20, 2016 10:29 PM
By Julian Routh / Pittsburgh Post-Gazette
Although he couldn’t walk or see, and though he could barely talk, Rex Timko knew the name of every character in Disney’s “Cars” movies.
Which is no small feat even for someone without a debilitating genetic disorder, considering there are more than 100 cars in the series. But the 9-year-old, who battled late infantile Batten disease most of his life, knew a thing or two about how to live happily in the face of insurmountable odds.
“We decided when he was diagnosed, we were not going to lay down and die,” said his mother, Autumn. “We were going to live the hell out of this life with him.”
In what his family called his final lap around the racetrack, Rex Timko, a “bright, shining light who brought out the best in everybody,” died Friday at his home in Forward.
Diagnosed at age 3 with Batten, Rex fought frequent seizures and lost control over his muscles and eyesight over time. He was never able to speak in sentences more than two or three words long, and could barely hold his head up. Children who have the rare brain disease, which has no known treatment or cure, are expected to live only until age 8 to 12.
Autumn said she and her husband, CJ, had known for six years their son’s death was coming, but that didn’t prepare them for the day it happened.
“We were very fortunate we were all home,” she said. “The three of us were holding him. He was comfortable. He was at peace. And he literally closed his eyes and took his last breath. If I could have designed the way he had to go, it would be just like that.”
A third-grader in the Elizabeth Forward school district, Rex enjoyed his occasional visits to the classroom, where other students treated him “like a rock star,” Autumn said.
It was this support from the community that helped the family cope; Rex’s story was the subject of a popular Facebook page, “Rally for Rex,” that became the outlet for an outpouring of condolences over the weekend. One person wrote, “I know you are watching over your beautiful family happier than a tornado in a trailer park taking that victory lap. Ka-chow, Rexy!”
Autumn said she created the Facebook page to raise awareness of the disease, which occurs in an estimated 2 to 4 out of every 100,000 births in the United States. For there to be enough funding to find a cure, she said, people need to have heard of it first.
But for now, Autumn said she keeps thinking back to one moment in particular: when she hugged her son for the last time the day before his death.
“I didn’t know it was the last time when it happened. But he wrapped his little arms with as much energy he could muster around my neck and kissed me on my cheek, and he never moved again after that,” she said. “I’m glad I actually paused in that moment and lived right in that moment and was there for it.”
Besides his parents, Rex is survived by his 12-year-old sister, Mara. His funeral was Monday at the Gilbert Funeral Home in Elizabeth.
Julian Routh: firstname.lastname@example.org or 412-263-1488.