Paul i am a new mother to a child with PWS over 90% of face and oh maybe 50% of body with hypertrophy to left leg and some left arm, also PWS in both eyes and evidence og glaucoma to both.

I appreciated reading your history you wrote to Hank and wish you the best of luck with school!

I was wondering when you said your mom saved you several times from SWS realted issues, what exactly were they, is that seizure realted? I can not tell how fatal this diagnosis can be and want to know all i can!

I am still recovering from the whole labor and delivery thing, jack is just 9 days old, but am anxious to get a grip on SWS. It seems to vary so much frmo person to person. And it seems you don't really know the full extent of it until sometime( and then still I guess it can always have pregressive issues), speaking from a newborn perspective.

Thanks for any insight and advice you may offer, i just want to be the best Mommy i can!

Gail,

You can email me at at ultimo316@yahoo.com, and if you wish we can talk about this on the phone, I feel as though talking about such a situation would bring fourth more understanding rather than trying to type up explanations. Send me an email note and I'll reply with my number that you can reach me at.

-Paul