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An Oklahoma mother's journey: raising a child with rare genetic disease

Oklahoma mother Joy Ludwig is raising awareness and funds for Prader-Willi Syndrome, a rare genetic disease with which her 2-year-old son was born.
by Heather Warlick Modified: May 10, 2014 at 10:25 pm •  Published: May 11, 2014

Editor’s note: This Mother’s Day, we honor mothers who face challenges and trials while sharing unconditional love with their children. Joy Ludwig, 34, of Kingfisher, is an example of a devoted mother with a parenting challenge unlike most: Her son Jener suffers from a rare genetic disease that one day will lead to chronic hunger. Today, Joy tells her story. To Joy and all mothers, we say Happy Mother’s Day.

Jener Ludwig was born practically lifeless. He was limp, his eyes closed. He didn’t cry and had no appetite.

He was a bit small — 6 pounds, 9 ounces. And when he was placed in his mother’s arms, Joy Ludwig knew something wasn’t quite right. “He looked like a dead baby.”

Later in life, however, it’s almost a guarantee the child will seem quite different — behaviorally challenged, forever cognitively impaired and suffering from an insatiable appetite.

Such is the cycle of Prader-Willi Syndrome or PWS, a rare genetic disease Jener was born with. About one in 20,000 babies have it.

These babies barely have the energy to hang on to life. The disease made Jener so weak at birth, he couldn’t suck from a bottle. He had to be fed through a tube and hooked to heart rate and oxygen monitors for the first months of his life.

He went home after 24 days in the neonatal ICU at Baptist Medical Center, still attached to his lifesaving equipment, completely dependent on his parents, who had been trained to insert feeding tubes and monitor his heart and oxygen.

Not until he was about 4 months old did Joy Ludwig hear her son cry like a typical newborn.

But she cried. She said she suffered from extreme anxiety when her husband, Julian, had to go back to work after six weeks’ paternity leave.

She was overwhelmed by the prospect of taking care of her desperately needy baby while also parenting their 2-year-old son Jensen.

She made it through those first hard times by taking action. She networked on Facebook with other parents of children with Prader-Willi Syndrome and even organized a fundraiser last fall.

This year, she will spearhead the One Small Step walk and run Sept. 27 in Kingfisher. You can donate or sign up at Select Joy Ludwig to donate to her campaign.

A devastating disease

Cognitively, Jener may or may not be on par with his peers, but experts say it’s possible he can be, with vigilance. The average IQ for kids with Prader-Willi Syndrome is about 70, according to

If the disease isn’t stopped or a drug isn’t found to regulate it, Jener will want to eat constantly when he grows older. PWS affects hormones that regulate appetite, and kids with the disease feel as if they are starving to death.

In fact, Prader-Willi Syndrome is the No. 1 genetic cause of childhood obesity in America, said Dr. Jennifer Miller, a pediatric endocrinologist and associate professor of endocrinology at the University of Florida. One of the nation’s leaders in treating PWS, she sees about 450 kids each year with the disease from across the country at her practice in Gainesville, Fla.

Miller has treated Jener since he was strong enough to be taken to Florida to see her.

As of now, there is no treatment for the hunger. To complicate matters, kids with PWS have such low metabolism, their diet must be restricted to very low calorie counts, Miller said.

“I mean, they’ll eat everything: pet food, garbage, raw food, anything. You name it, they’ve eaten it,” Miller said. “It’s the main impediment to their living independent lives, because they simply can’t control themselves.”

But that’s in the future for Jener. First he’ll go through the early stages of PWS, fighting his weak body and gaining cognitive skills a little slower than other children. Then, he’ll likely have behavioral problems. He also faces surgery necessary to correct incomplete formation of his sex organs due to PWS.

But he has a mother who is so devoted to caring for her son’s special needs that she sold her salon of eight years to be with her children. She is soldiering through the trials for the good of Jener and Jensen, though it’s been tough.

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by Heather Warlick
Life & Style Editor
Since graduating from University of Central Oklahoma with a Bachelor's Degree in Journalism, Staff Writer Heather Warlick has written stories for The Oklahoman's Life section. Her beats have included science, health, home and garden, family,...
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