About a year ago, I gave birth to what I thought was a full-term, healthy baby girl, until she ended up spending nearly a month in the NICU.  The doctors and nurses were having such a hard time finding the cause of her low muscle tone and poor feeding.  They ran almost every test you can possibly think of.  It wasn't until I did my own research that I stumbled upon Prader-Willi Syndrome.  After reading all the information on this Syndrome, I knew it.  I asked for a genetics testing because I was certian that she had Prader-Willi Syndrome.  To my disappointment, most of the medical professionals have never even heard of this Syndrome.  And during her many hospital stays over the past few months, I found that, again most people did not know of this condition. 

Prader-Willi Syndrome has many symptoms including:

(For Infants)

- hypotonia (low muscle tone)
- Poor growth
- Poor feeding
- developmental delays
 

(For older Children)

- mild to severe mental retardation
- developmental delays
- insatiable appetite (obesity, diabetes)
- slow metabolism
- temper outbursts
- manipulative behavior  (to get food)

(Adults)

- insatiable appetite (obesity, diabetes)
- inferitility
- temper outbursts
- manipulative behavior (to get food)
- mild to severe mental retardation

To quote another mother in Minnesota:

"People with PWS live with a brain that is convinced that their body is in a perpetual state of starvation.  It means their bodies do what any other victim of starvation would do.  Their metabolism drops to half the normal rate.  Their bodies store every last extra calorie as fat rather than building much needed muscle.  Worst of all they are subconsciously compelled to search for food every waking moment of their lives.  This makes it almost impossible for for them to think of anything else.  This isn't just hunger, this is primal survival." - Colette Joncas

Because this condition is so rare, there hasn't been much research done for it.  Please help us raise awareness and funds for the proper research to treat the insatiable hunger that affects so many lives. 

Thank you for visiting my personal campaign page!  I am helping to raise money for the Foundation for Prader-Willi Research. All proceeds from the One SMALL Step walks go to fund the Prader-Willi Syndrome Research Plan jointly created by FPWR and PWSAUSA. Learn more about PWS and this event at http://www.fpwr.org/. Please join me and donate now!