HAMILTON, Ala. — Waylon Sullivan was almost a year old when he was diagnosed with Lowe Syndrome, a disease that mainly affects the brain, eyes and kidneys and affects one out of every 5,000 males.
His father, truck driver Benny Sullivan, said Waylon was born with cataracts in his eyes, which is highly irregular with babies. After Waylon went through a round of initial surgeries, he was referred to the University of Alabama at Birmingham, where they discovered that his acids and proteins were really high.
“That’s when we put everything together and he was able to be diagnosed,” Benny Sullivan said. “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 … I wouldn’t be able to explain what caused it, because we don’t know,” he continued. “God chose us to take care of this special guy.”
Sullivan has been in the trucking industry for 12 years. He drives a 2015 Kenworth T680 and is leased to Kaplan Trucking Co. in Cleveland, Ohio, where he mostly hauls steel. Sullivan’s truck is decorated with large eyeglasses with more than 194 names of children who have been diagnosed with Lowe Syndrome printed in each lens. The truck also features custom-made lights in the shape of an “X” to represent the chromosome children that suffer from Lowe Syndrome are missing.
Sullivan displays the truck at different shows, which gives him an opportunity to tell others about the Lowe Syndrome. Sullivan said he has been able to spread some awareness, thanks to local newspaper coverage and when people ask him questions at truck stops, and that he likes talking to others about the issue because it shows they care and are interested in helping.
“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 said he has had the opportunity to meet the families of some of other boys with the syndrome.
“A lot of these families have already gone through the early stages that we are currently in, so it has been a good support group for us,” he said.
In an effort to raise money for the Lowe Syndrome Association, a nonprofit that supports research into Lowe Syndrome and provides resources for individuals and families affected by the syndrome, Sullivan was planning to host a truck and motorcycle show in Hamilton, Alabama, Aug. 1, but the show was canceled due to the COVID-19 pandemic. He said he is considering planning another event in April or May 2021. For more information about the Lowe Syndrome Association, visit lowesyndrome.org.
“We are hoping (a show) will be a great event,” Sullivan said.
Sullivan also said he hopes enough people will take part in the first event and that their participation will lay the groundwork for future events.
“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.
Waylon goes to therapy twice a week in Jasper, Alabama. Sullivan said that for the most part, Waylon is a happy baby, although a little moody — a symptom of Lowe Syndrome. At 17 months, Waylon only weighs 18 pounds due to slow muscle development.
“Other than that, he is a happy baby,” Sullivan said.