Hi, I’m Jaylee and I have Prader-Willi Syndrome (PWS).  I was born on January 6, 2014.  My mom had a normal pregnancy until about week 30.  She started having too much amniotic fluid, which is a sign of PWS but she didn’t know that yet.  Her doctor admitted her into the hospital and they performed an amniotic reduction.   Every day the doctors would do an ultrasound on me to see how I was doing.  Finally, on January 6 the doctors said it was time for me to be born.  I wasn’t moving much or responding to the doctors so they were ready to meet me.  At the time, we had no idea what I was diagnosed with but infants with PWS are born very low tone.  They call it “failure to thrive.”  I wasn’t able to move much.  I didn’t even open my eyes until I was five days old.  I couldn’t suck my own bottle.  Because I was unable to suck a bottle, the doctors put a feeding tube in so I could eat.  As you can guess, my family was worried about me.  But I was in great hands because my doctors knew what to do.  After many test, I was diagnosed with PWS.  PWS is a rare genetic disorder that has two stages.  The first stage, infant stage, is where I am now.  I was born very low tone.  I didn’t move much.  I slept a lot.  But through great doctors and lots of therapy I’m getting stronger every day!  I can now sit up.  I’m actually crawling now. I’m eating everything by mouth now so I’ve been able to get my feeding tube removed.  I am now 2 years old and I’m doing great! 

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