>>PWS AWARENESS MONTH - QUESTIONS

As part of Prader-Willi Syndrome Awareness Month, I encouraged my facebook friends to ask me their questions regarding PWS.  Sometimes it feels uncomfortable to ask the questions we have about people who might be "different."  We worry about offending them or seeming insensitive.  The truth is, I love when people ask questions about Clover and PWS.  It's already lonely enough having a child with special needs, but when people don't want to talk to you or get to know you or your child, it can seem all the more lonely.  I always, always appreciate questions.....it makes me feel that you  really care and want to understand where we're coming from....or why we do what we do....or worry about the things we worry about.

I will share the questions I received on facebook and my answers here on the blog.

The first question came from my awesome cousin, Emily. She asked, "What is the whole prognosis for precious children with PWS?"

This is a tough question to answer. To be honest, it's hard to know what the future holds for Clover. And I don't mean that in a negative or depressing way. Kids these days are being diagnosed with PWS at such an early age (Clover was one month old, but others are even diagnosed within a few days of birth). Because of the early diagnosis, kids are starting growth hormone right away, they are starting therapy right away, and good, healthy eating habits are being established almost immediately. With all of these things in place, the sky is seriously the limit for our kids. Clover will crawl, eventually, and she will walk, eventually. She will also, run, play with friends, and maybe even ride a 2-wheel bike one day (if not, no biggie!).

The severity of symptoms differs from kid to kid, and different stages happen at different ages. For example, some kids experience the "hunger" phase at age 4....while others it may not happen until age 12. Some families lock their fridge and cabinets and others don't. We don't know what we will do because we are simply not there yet and don't know what will work best for Clover and our family.

IQ varies from kid to kid. Some kids are in resources classes at school, while others are in a regular classroom, with or without an aid. Some struggle with behavior issues more than others. Some adults are able to live a little more independently than others (I don't know that any PWS adult truly lives on their own??). Some adults live at home with their families, while others live in group homes. I have one PWS friend who lives with her boyfriend in a separate part of the family home. Some kids go to college, some don't. I also have a friend who has a daughter with PWS who has her driver's license!

Most individuals with PWS are infertile, however, not all (I have heard of some PWS women having kids). Life expectancy can be normal if weight and other health factors are controlled.

So as you can see....it's really hard to know exactly what Clover will be able to do and what things might be more of a challenge. It's all just a wait and see type thing. We chose to just hope for the very best and to provide her with all of the supports possible so she can live to her full potential!