The Tribune Democrat, Johnstown, PA

March 4, 2013

Girl with hunger disorder spurs action

Enelly Betancourt
Intelligencer Journal / Lancaster New Era

Elizabethtown — Two-year-old Siena Schoenberger has a genetic disorder that makes her hungry all the time.

She was born with Prader-Willi syndrome, which causes her to have an insatiable appetite. If someone doesn't stop her from constantly eating, the consequences could be tragic.

Prader-Willi is the most common known genetic cause of life-threatening obesity in children. Currently, it has no cure.

Keeping Siena at a healthy weight will be a constant battle for her parents, Jamie and Andrew Schoenberger of Elizabethtown.

"The heart of our home ... the kitchen, is like a loaded gun for our child," Jamie Schoenberger said.

In their quest to help create awareness of the disorder and raise money for the Foundation for Prader-Willi Research — established in 2003 by parents who saw the need for research to help their children with Prader-Willi lead more healthy lives — the Schoenbergers will be participating in a national rally Wednesday in Washington, D.C.

First lady Michelle Obama has invited the foundation, along with 50 families in the PWS community, to be part of her "Let's Move" event.

"Our group will have the opportunity to meet with government officials to discuss the specific role we can play in the fight against obesity in general, and the importance of exercise for children," Mrs. Schoenberger said.

Approximately 20,000 Americans have PWS. It affects males and females equally, and it occurs in all races. The condition disrupts the normal functions of a portion of the brain called the hypothalamus, which controls hunger and thirst.

PWS typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development and a chronic feeling of hunger.

Siena was diagnosed with the syndrome two days before her first birthday. Her sisters — 5-month-old Lucca and Isla, 5 — do not have PWS.

If allowed, Siena would eat to the point that it would affect her health.

"She hasn't gotten to that stage yet because she can't access the food on her own," Mrs. Schoenberger said.

Sweets, she said, are completely off the menu.

"Siena's diet consists of healthy food. She eats whatever we give her ... a lot of proteins, vegetables and fruits ... and she is content with it as long as she knows when she is going to get it," Mrs. Schoenberger explained.

Her daughter, Mrs. Schoenberger said, likely will never be able to lead a fully independent life, but the family remains hopeful.

"We are hoping that, by the time she grows up, things are different in terms of research and support programs," she said.

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Information from: Intelligencer Journal/Lancaster New Era , http://lancasteronline.com