Paducah Kentucky On The Move for PWS

You’re invited to join folks from all over the area on Saturday, June 3, at the first Paducah Kentucky On the Move for PWS. It’s taking place from 9 am- 1 pm at Noble Park. Registration is only $25. You can register at firstgiving.com/pwsausa/kentucky-on-the-move.

The purpose of this walk is to promote awareness of Prader-Willi Syndrome (PWS), as well as continue to save and transform lives. It is hoped that funds raised will help to provide support to children and family members who struggle with this syndrome every day. The money raised at this event will go towards research for a cure, in-patient hospital assistants and travel assistants.

This event was organized by Jared and Danielle Thweatt, whose three-year-old son Harrison, has the disease. “I wanted to host this event to raise awareness for PWS," explained Danielle. “Most people I come in contact with have never heard of it. I want it to become more common, even though it's a very rare condition. I hope that people should come out to this event and learn more about PWS!”

For more information on this event visit their Facebook page facebook.com/events/264036827341925 or email Danielle at dthweatt12@yahoo.com.

Prader-Willi syndrome

Prader-Willi Syndrome (PWS) is a complex genetic condition that affects many parts of the body. In infancy, this condition is characterized by weak muscle tone (hypotonia), feeding difficulties, poor growth, and delayed development.

Beginning in childhood, affected individuals develop an insatiable appetite, which leads to chronic overeating (hyperphagia) and obesity. Some people with Prader-Willi syndrome, particularly those with obesity, also develop type 2 diabetes mellitus (the most common form of diabetes).

A Parent’s Journey

This event was organized by Jared and Danielle Thweatt. At four weeks of age their son Harrison was diagnosed with Prader-Willi Syndrome. Despite daily struggles, he is now a happy, healthy three-year-old.

“Supporting PWSA would mean opening more doors for Harrison and others who live with PWS,” Danielle said. “Please consider donating or walking with us to support our cause!”

Harrison was their first child. Danielle had a normal, healthy pregnancy so they had no idea anything was wrong until after birth. At birth, Harrison was quiet and very sleepy. He didn't want to wake up, and he also didn't want to eat - the doctors knew something was wrong. Harrison was transferred to a hospital with a NICU for the next four weeks and diagnosed with PWS.

“Of course it was hard. We had no idea anything was wrong with him. We thought he was going to be just a healthy baby,” Danielle told me. “Our whole world changed once we got the diagnosis. We haven't faced the big main symptom you read about with PWS, the excessive eating. We are facing some developmental delays such as he hasn't learned to speak very well yet. Harrison knows about five words. He is also very short for three-years-old and has difficulty swallowing, so we still have a feeding tube.”