PRADER WILLI SYNDROME

Prader Willi Syndrome (PWS) is a rare and complex genetic disorder caused by an abnormality on chromosome 15.  In infancy, characteristics include weak muscle tone, feeding and breathing difficulties, poor growth and delayed development.  Beginning sometime in childhood, children with PWS develop an insatiable appetite.  Their brain never signals to them that they are full and therefore they have a constant feeling of hunger....like "I am starving and need to eat!" kind of hunger....all day....every day.  These children are not able to metabolize their food normally and therefore their food intake must be monitored at all times.  They are hungry and want nothing more than to eat, yet they can't.  Just one episode of overeating could be life threatening for these kiddos.

While PWS is rare, occuring in just 1 out of every 15,000 births, it is the most common genetic cause of childhood obesity.  In addition to obesity, other symptoms of PWS include cognitive challenges, speech apraxia/dyspraxia, short stature, small hands and feet, scoliosis, sleep disturbances with excessive daytime sleepiness, undescended testicles in males, high pain threshold, and infertility.  Behavioral difficulties may include obsessive-compulsive symptoms, skin picking, and difficulty controlling emotions.

Learning that our sweet, perfect daughter has a life-threatening disorder (which has no cure) was heartbreaking....beyond heartbreaking...there is really no way to adequately describe it.  Heartbreak and sadness along with a million other emotions sneak up on us daily.


If you just found out your child has PWS, don't do what I did.....don't google it!  Much of the information you will read will only scare you...and much of it is also outdated.  Instead, email me and lets get connected and share our experiences! (jennycheney@gmail.com).  Connecting with other families who actually "get it" has been the very best thing I could have done.  These families truly understand all the fears, the sadness, the rough days, the happy days, the overwhelming and scary days, and the very exciting days when our little ones drink a full bottle for the very first time.


Two websites that I have found to be very helpful and informative are... (click on icons to go to site)