Walk, Run Brings Awareness to Prader-Willi Syndrome

October 23, 2013 at 9:44 am

The 2nd AnnuEllie Spearmanal One SMALL Step event, called “Exercising with Ellie & Others Fighting PWS,” will be held Saturday, Oct. 26 on the Hodge Quad at the University of South Carolina Upstate.

The event will feature a 5K run/walk and kids fun run. Participants should don their 80’s gear and check-in at the registration booth between 8:30 and 9:30 a.m. The fun begins at 10 a.m.

Registration is $20 or $40, if you’d like an event t-shirt.

Who is Ellie and what is PWS?

Ellie Spearman was diagnosed a little more than a year ago with a rare genetic disorder called Prader-Willi Syndrome.

PWS is the most common known genetic cause of life-threatening obesity in children. Although the cause is complex it results from an abnormality on the 15th chromosome. PWS doesn’t discriminate; it occurs in males and females equally and in all races.

PWS typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes constant supervision necessary. Average IQ is 70, but even those with normal IQs almost all have learning issues. Social and motor deficits also exist. At birth the infant typically has low birth weight for gestation, hypotonia (weak muscles), and difficulty sucking due to the hypotonia which can lead to a diagnosis of failure to thrive. The second stage (“thriving too well”), has a typical onset between the ages of two and five, but can be later. The hyperphagia (extreme unsatisfied drive to consume food) lasts throughout the lifetime. Children with PWS have sweet and loving personalities, but this phase is also characterized by increased appetite, weight control issues, and motor development delays along with some behavior problems and unique medical issues.

The run/walk has been organized by Ellie’s parents, David and Gwyn Spearman, to help bring awareness to the issue and to raise funds for PWS research. Last year’s event raised just more than $20,000 and the Spearmans have set a lofty goal of $80,000 for this year.

To help reach this goal, there is a silent auction on Facebook that will run until 9 p.m. Oct. 26. Go to Facebook and search One Small Step for Prader-Willi Syndrome, Upstate.

To register for “Exercising with Ellie,” visit http://bit.ly/Exercise-with-Ellie Donations can also be made on this website.

For additional information, contact Gwyn Spearman at (864) 909-2721 or at gwynspearman@gmail.com.