MAY IS PRADER WILLI AWARENESS MONTH AND IT IS SO AMAZING TO SEE ALL THE PRADER WILLI FAMILIES COME TOGETHER DURING THIS MONTH. SINCE ETHAN IS ONLY NINE MONTHS OLD THIS IS OUR FIRST YEAR EXPERIENCING THIS, AND I GOT TO SAY I AM VERY IMPRESSED.
THERE ARE SO MANY DIFFERENT EVENTS THAT PARENTS OF PRADER WILLI CHILDREN ARE PUTTING ON ALL OVER THE WORLD. THERE ARE RUNS, WALKS GOLF TOURNAMENTS, AND KENTUCKY DERBY PARTIES. ALL OF THESE EVENTS ARE PUT ON TO RAISE AWARENESS FOR PRADER WILLI SYNDROME. I WISH I HAD THE TIME AND MONEY TO ATTEND EVERY SINGLE EVENT, BUT WE CAN'T.HOWEVER WE WILL BE ABLE TO MAKE THE COLORADO PWS KENTUCKY DERBY PARTY THIS SATURDAY.
I AM SO EXCITED MY FIRST REAL PWS EVENT. AND THIS BEING THE FIRST YEAR OF BEING A MOTHER, I CAN NOT THINK OF A BETTER WAY TO SPEND MY MOTHER'S DAY WEEKEND WITH MY CHILD.
I WOULD BE LYING IF I DIDN'T SAY I AM A LITTLE NERVOUS , I GUESS I AM JUST UNSURE WHAT TO EXPECT. THIS DIAGNOSIS SEEMS LIKE IT HAS BEEN WITH US FOREVER, BUT THE REALITY IS IT IS STILL VERY NEW. I AM SURE AT THE DERBY SATURDAY WE WILL HEAR OR SEE STUFF THAT WE MIGHT NOT BE PREPARED FOR. ON THE OTHER HAND I AM OVER THE TOP EXCITED. I CAN'T WAIT TO MEET PARENTS THAT HAVE BEEN WHERE WE ARE, AND MEET THE BEAUTIFUL PEOPLE THAT SUFFER FROM PWS SYNDROME. I CAN'T WAIT TO WALK AROUND AND TAKE IT ALL IN, AND TO WALK AWAY FROM IT LEARNING SOMETHING I DIDN'T KNOW.
YOU CAN LOOK UP THE SYNDROME ON THE INTERNET UNTIL YOU ARE BLUE IN THE FACE AND EVEN ASK DOCTORS EVERY QUESTION YOU CAN POSSIBLY THINK OF, BUT YOU WILL NEVER GET A BETTER UNDERSTANDING OR A BETTER OUTLOOK ON THIS SYNDROME UNTIL YOU SPEAK WITH PARENTS WHO HAVE BEEN WHERE YOU ARE . I HAVE LEARNED MORE FROM THE PARENTS IN THE LAST 9 MONTHS THAN ANYWHERE ELSE. IT IS SO NICE TO BE ABLE TO ATTEND THESE EVENST AND MAKE THOSE CONNECTIONS WITH OTHERS. IT IS NICE TO KNOW THAT YOU AREN'T ALONE, AND THAT NO MATTER HOW HARD IT WAS FOR THESE PARENTS THEY MADE IT IT THROUGH THE ROUGH TIMES.
WHAT I AM MOST EXCITED FOR IS TO MEET OTHERS THAT HAVE PWS. BESIDE ETHAN I HAVE NEVER MET ANYONE WITH PRADER WILLI, AND I CAN'T WAIT. IF ETHAN IS AN EXAMPLE OF WHAT THESE KIDS MIGHT BE LIKE, I MIGHT WANT TO TAKE THEM ALL HOME WITH ME :) . I HAVE NEVER SEEN SO MUCH STRENGTH AND COURAGE UNTIL ETHAN CAME ALONG. HE HAS TRULY CHANGE MY OUT LOOK ON LIFE. HE HAS MADE ME A BETTER PERSON. I KNOW BY MEETING OLDER CHILDREN WITH PRADER WILLI IT IS GOING TO MAKE ME EXCITED FOR WHAT LIES AHEAD FOR US, IT IS GOING TO MAKE ME REALIZE WHAT AN AMAZING GIFT WE HAVE..... I CAN'T WAIT
HERE IS AN EXPLANATION FROM THE NATIONAL SITE:
What is Prader-Willi syndrome?
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. It occurs in males and females equally and in all races. Prevalence estimates have ranged from 1:8,000 to 1:25,000 with the most likely figure being 1:15,000. 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
