The Children's Institute Blog

Twins In The Prader-Willi World

Posted: Apr 24, 2018 by The Children's Institute

On May 8, 2004, Dianna Schatzlein nearly died.

Hours later, the Connecticut woman, suffering from intense premature labor, high blood pressure, and a host of other problems, became a mother for the third – and fourth – time via emergency C-section.

She didn’t see her Identical Mirror Twin boys, Edward and Stephen, right away. But when a nurse showed her photographs, she knew something was wrong.

After lengthy testing, the boys were diagnosed with Prader-Willi syndrome, developmental delays and autism. Every day has been a struggle.

“I can’t explain it. When I read up on Prader-Willi syndrome, it just matched,” Dianna said. “As a mother, you just know – there’s something significantly wrong.”

Prader-Willi Syndrome (PWS) is a rare, complex genetic disorder affecting appetite, growth, metabolism, cognitive functioning, and behavior. The hallmark characteristics include chronic feelings of insatiable hunger and slowed metabolism that can lead to excessive eating and life-threatening obesity. Estimates say one in 12,000 to 15,000 people has Prader-Willi. Although considered “rare,” PWS is one of the most common conditions seen in genetic clinics and is the most common genetic cause of obesity that has been identified to date.

At age five, the twins were caught stealing food from trashcans at school. Later, they set a small fire in their home near New Haven, Conn. when they tried to cook cat food in the toaster oven.

“That was another sign – they’re always hungry,” Dianna said.

Now 13 and in a specialized school, Dianna and the twins have found the help and counsel they need through The Children’s Institute’s care coordination program. A doctor in the state Department of Developmental Services pointed her in our direction.

“She said, You’re the perfect candidate for the Prader-Willi care coordination program in Pittsburgh – are you interested?” Dianna said. “I’ve been with the program for four months and it’s been phenomenal – Lucy has helped in so many ways.”

She’s talking about Lucy Krut, a registered nurse and PWS care coordinator. Lucy assists families with obtaining appropriate medical care related to Prader-Willi in their community. When a teacher at the twins’ previous school threatened to withhold breakfast from Stephen because she said he needed to brush his teeth – a saliva-filled mouth is a commonly misunderstood side-effect of Prader-Willi – Dianna called Lucy.

“She’s not afraid to call meetings. She’ll call the school,” Dianna said. “She loves her kids with Prader-Willi syndrome and she takes care of the parents.”

“I believe families are relieved to be able to speak to someone who understands the true complexity of Prader-Willi syndrome and understands their very real struggles in trying to obtain appropriate services for their loved ones,” Lucy said, in response. “Being present as a co-advocate for our clients and as an ally for their parents and caretakers provides support and understanding that is difficult to come by for most of our families.”

“My goal is to get them to be as independent as they can, but I am all they have,” Dianna said. “The future scares me for them. They’re great, great kids. They’re the most lovable little guys ever. I want them to be independent, as much as they can.”

“Every day’s a struggle, I’m not going to lie,” she added. “I’m a single mom. I have to wear a lot of hats. Things aren’t easy at all. But it helps that I have Lucy – and services.”

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