Prader-Willi Syndrome

As most of you know, my daughter, Danielle, was born on February 4, 2000 and was diagnosed with Prader-Willi Syndrome (PWS) two weeks later.

Over the years, I have collected numerous articles and brochures that have helped us navigate this rare genetic disorder.

Here, I will share them with you: friends, family, and fellow parents.

What is it like to have Prader-Willi Syndrome?

When Danielle was ten months old, we started her on Growth Hormone to help her muscles grow. One the things that really helped answer all our questions and concerns was a research publication called, "The Endocrinologist" when had just put out a supplement completely covering PWS and Growth Hormone. With their permission, I scanned the whole booklet to share with other parents.

At three years of age, Danielle could only say 4-5 words. We used a lot of sign language. Here are two sheets that we handed out to her day care to help out. Sheet 1. Sheet 2. Now that she's eight, she speaks pretty well. Since we've moved to North Carolina several months ago, she's already picking up her teacher's Charleston accent! It's "tiiiime for lunch!" :-)

Danielle and David

Whether they are building forts together, playing horsey, or just complaining about each other, "He's looking at me!" "She's touching me!" Danielle and David are finding their way through the wonderful world of siblings.

Danielle at six months

After six months of me lifting her head and turning it side to side, she finally lifted her own head and looked at me.

I used a whole roll of film and got doubles when I had them printed. I'm sure the developer wondered why I needed doubles of a whole roll of the exact same picture, but to me, each was a gloriously unique example of success!

The DiCola's

Lori, Danielle, and David