This driver and his custom truck are spreading awareness about his son’s rare diagnosis

Benny Sullivan has been in trucking for 12 years, so he's no stranger to the road, but when his 1 year old son received a rare diagnosis, he knew he was entering uncharted territory. Now, he's using his truck to spread awareness and support.  Sullivan's son Waylon was born with cataracts in his eyes, a rare occurrence in children.

After a year of surgeries to remove them, doctors realized something still wasn't quite right. After a referral to the University of Alabama, Waylon was soon diagnosed with Lowe Syndrome, a rare disease that affects the eyes, brains, and kidneys.  After receiving the news, Sullivan knew he had to spread awareness and connect with other families going through the same ordeal, so he looked to what he knew best - trucking.

Sullivan now travels the country in his 2015 Kenworth T680 hauling steel and spreading awareness with the help of large eyeglasses stickers with the names of 194 other children diagnosed with Lowe, as well as custom made, X-shaped lights, representing the chromosome that these children are born without.  "[The University of Alabama is] when we put everything together and he was able to be diagnosed," Benny Sullivan said to The Trucker. "Normally the mother is a carrier of this syndrome, but they don't usually know until they have a child." "My wife, Wendy, was tested and she was not a carrier of the gene," he continued. 

"I wouldn't be able to explain what caused it, because we don't know. God chose us to take care of this special guy." Sullivan now takes the truck to different truck shows across the country and often answers questions at truck stops. 

"It shows me that the truck is doing what it is designed to do -- making people aware," he said. "There are less than 1,000 kids in the world with Lowe Syndrome. To make people aware (of this) means a lot to me. These kids still need help, because there is still more research to be done and things like that."

Sullivan was planning to host his own truck and motorcycle show in Hamilton, Alabama, Aug.

1 to raise money for the Lowe Syndrome Association, but the show was canceled due to COVID-19. He is considering planning another event in Spring of 2021. "We are hoping (a show) will be a great event," Sullivan said.

"It will be a good opportunity to talk to people and raise money for the Lowe Syndrome Association, and hopefully they get some more info about (the illness)," he said.

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