Hillsboro family helps son cope with rare disorder that always k - KPTV - FOX 12

Hillsboro family helps son cope with rare disorder that always keeps him hungry

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The Lentz family in Hillsboro keep a strict diet plan and schedule for Austin, 7, due to a genetic disorder that makes the boy constantly feel like he is starving. (KPTV) The Lentz family in Hillsboro keep a strict diet plan and schedule for Austin, 7, due to a genetic disorder that makes the boy constantly feel like he is starving. (KPTV)
HILLSBORO, OR (KPTV) -

While many parents worry if their children aren't eating, one rare disorder causes kids to do the exact opposite.

Prader-Willi syndrome, or PWS, is a genetic disorder that causes cognitive problems, low muscle tone, and an insatiable appetite in children who suffer from it.

Jamie Lentz’s 7-year-old son Austin was diagnosed with PWS at an early age.

"I've heard it equated to going three days without food,” she explained. “Just that feeling of starving or insatiability all the time.”

PWS often leads to childhood obesity, because kids who have it literally can't stop themselves from eating. Lentz and her husband have been able to manage Austin's weight with a strict diet plan and constant supervision.

"We feel really blessed that we found out so young," Lentz said. "We were able to kind of set up his schedule, so he has a very strict schedule of when he eats. He has a very strict calorie schedule as well."

For the last two years, Lentz's mother and sister have organized 5K run/walk fundraisers to raise awareness for PWS and raise money for research.

Saturday, July 30, will be the third annual One Small Step event, to be held jointly at Hillsboro High School at 8:00 a.m. and Salmon Creek Regional Park in Vancouver at 9: a.m.

Organizers hope to raise between $20,000 and $25,000 for the Foundation for Prader-Willi Research.

To learn more about the work of the Foundation or see how to donate for the event, visit OneSmallStep.FPWR.org.

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