PINECREST, Fla. – Approximately one out of every 15,000 children born in the U.S. are diagnosed with Prader Willi Syndrome, a condition that is recognized as the most common cause of life-threatening childhood obesity.
With a history of cervical cancer, Dorothea Lantz and her husband Russell never thought she’d become pregnant.
When it happened at age 37, she began another difficult journey.
“When he was born, it was like ‘Bam!,’ the shoe dropped,” Lantz said.
Their son Hunter was born with a condition called Prader Willi Syndrome.
“That was the first time I’d ever heard about it, and I don’t know if you’ve ever googled it -- it’s not pretty,” Lantz said.
Children with PWS have a disconnect between the brain and the stomach, which means they never feel “full,” leaving them with constant hunger, and being desperate to eat.
“So we have many (in) our family that have a loved one with PWS (who) have closed kitchens, locked cabinets, locked trash cans -- food-seeking behavior, and it’s not their fault. They don’t have the ability to know they’re full. They’re starving all the time,” Lantz said.
To complicate things even further, Hunter also has autism, another disorder that often overlaps with PWS.
Lantz is now working with the Prader Willi Syndrome Association U.S.A., along with support from Dr. Jennifer Miller at the University of Florida, Gainesville, to push for more research into potential treatments.
“We have people, for the first time in the natural history of PWS, that not only are going to college but they’re actually living in dorms, which is unheard of, it’s incredible,” she said.
And that gives her hope for Hunter.
“I want him to at least have a chance. He deserves a change,” Lantz said.
Efforts to develop viable therapies for PWS have hit stumbling blocks but there are a few drugs currently in the FDA approval process.
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