>>PWS AWARENESS MONTH

When I first learned of Clover's diagnosis of Prader-Willi Syndrome, of course the first thing I did was turn to google to learn all I could about it. That was a mistake. If you want to have the crap scared out of you and fear the future more than you ever have....then google PWS.
 
Clover was 4 months old when I first saw another child with PWS.  I was very anxious and I didn't know what to expect.  We attended a PWS clinic at Denver Children's Hospital and following the clinic, they held a little lunch get-together for all of the families.  I remember wondering what it was going to be like.  Would they all be really overweight?  Would they all be having tantrums?  Would they all be going nuts over the food?  I really didn't know what to expect, but the information I had read online about PWS, led me to believe I would walk into a room full of overweight, tantrum-throwing, food-seeking kids. 

I hesitantly walked into the room and was delighted to find well behaved, smart, beautiful kids.  They were asking questions, and playing together, and were so sweet and so kind.  My heart melted and I was filled with hope.  It makes me sad that the information I found online only included all the negative, scary facts about PWS.  I wish I could have read about all the good things too.  Like that these kids have the biggest hearts.  They are loving and caring.  They are smart.  They are beautiful.  They will have friends and be happy.  

I decided that for Prader-Willi Awareness Month, I wanted to make a video that showed just how incredible individuals with PWS really are. 
    
I would have absolutely loved to be able to watch a video like this....to see kids with PWS smiling, sitting, running, having fun, graduating from school, enjoying life. At the time of diagnosis, I didn't know if any of this would be possible....or be part of our future.

 These days, I know our future is full of hope. It's not as scary as it once seemed. Life can still be good and happy, even with PWS. Clover is growing, and learning and doing amazing things. She impresses me every single day and I couldn't imagine life without her.