Love For Llewyn - Finding treatment for Prader Willy Syndrome

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Meet our little Llewyn or as we call him Llew Llew.  He is a precious, beautiful bundle of Love and we are so blessed to have him.  He looks like a little Gerber baby.

Llew Llew was born with a genitic condition called Prader Willi Syndrome

I know most of you are asking what that is.  So did we.  Prader-Willi syndrome (PWS) is a rare genetic cause of life-threatening obesity in children, effecting 1 in every 25,000 births.  Stage 2 is hyperphagia (extreme unsatisfied drive to consume food) which lasts throughout the child’s lifetime.  It is a genetic disorder in the 15th chromosome.  One parental gene is missing or not expressed.  There is really no known cause for this condition.

There is hope however.  Much research is being done to help.  One very promising breakthrough is a drug called Oxytocin.  Clinical trials so far have been quite successful in curbing the driving hunger and helping these kids to just be kids.  To learn more about Prader Willi please visit The Foundation for Prader Willi Research website.

So my daughter and I are devoting ourselves to raising money for research and development.  Join us in our drive to fund medication that will make life better for our Little Llewyn and children like him.  Visit our websites to donate, participate in fund raising events and shop our store.

llewyn photo

To Donate, visit -

To Shop our Store go to our Love for Llewyn Gallery to purchase posters, note cards for now and more products as they are developed.

Also book mark this page for up to date information on fund raising events coming up.

Events Being Planned now

One Small Step Walk-a-Thon - This is being planned for May 2017 in Hopkins Park in DeKalb Illinois.  More information and links to come as this event comes together.