Raising twin boys is a challenge for any single mom, but it’s especially difficult for one particular mom in New Haven, Connecticut.
Dianna Schatzlein-Ahern’s two youngest sons, Stevie and Eddie Ahern, are 11. They both suffer from Prader-Willi syndrome, a genetic condition that makes them insatiably hungry no matter how much they eat.
“I have to keep everything locked away so they don’t get up in the middle of the night and have a feast,” Schatzlein-Ahern told Barcroft TV. “They can never feel full, so could potentially eat themselves to death.”
For health reasons, she attempts to limit her sons to 1,200 calories a day each. To do this, she has to lock up all of the family’s food; she also locks all the medications in her bedroom, and then locks her bedroom door when it’s time for sleep.
“They’ll eat out of the garbage. We always have to take the garbage out and put it outside,” she said, noting the boys are normally sleepwalking when that happens. “I don’t think they’re aware of it. They’re just so hungry that they’ll just eat, wherever they see food. They’ll eat it off the floor and they’ll eat it off anybody’s floor.”
Prader-Willi syndrome affects between 1 in 10,000 to 1 in 30,000 people worldwide, according to the National Institutes of Health.
The condition is a caused by genetic dysfunction on a specific area of chromosome 15. Most of the time, Prader-Willi syndrome occurs because a region of chromosome 15 from the father’s side is deleted. In rare instances, it can also happen when a child inherits two copies of chromosome 15 from the mother, instead of one from each parent.
Most diagnoses happen when the children are babies, but their mother says Eddie and Stevie only learned of their condition a couple of years ago.
“We knew there were issues when they were young, but no one could tell me what it was,” Schatzlein-Ahern told the New Haven Register. “We went from place to place, doctor to doctor, until finally one day I finally found a specialist in Long Island who was able to diagnose them.”
The stress of watching after them eventually took a toll on their mom and dad’s marriage.
“I’ve been living just me and the boys for two years now,” Schatzlein-Ahern told Barcroft.
There’s no cure for the hunger that comes with Prader-Willi syndrome, but growth hormone therapy and exercise can help reduce the risk of morbid obesity and build muscle.
People with Prader-Willi syndrome are prone to temper outbursts, stubbornness, and compulsive behavior such as picking at the skin, but, for Eddie and Stevie, those behavioral problems are exacerbated because they also have autism spectrum disorder.
“It’s so overwhelming,” Schatzlein-Ahern told Zip06.com.“They have so many health issues, they get obese, and they have severe mood swings, but they’re so lovable and like little mayors everywhere they go.”