Noonan's syndrome - does anyone suffer with this or know anything about it?

Hi
My LO has severe reflux and the Paeds have slowly been working their way through all the various tests to eliminate anything else. They found she had a heart mumour caused by pulmony stenosis and then reffered us to a genetisist last week. He thinks that she has something called Noonan's Syndrome which affects one in 1000 babies. The main symtoms are poor feeding, poor weight gain, reflux, short stature, heart problems, drooping eye lids. poor hearing etc (the list is frighteninglllly endless and thankfully she doesn't have all symptoms). Last week I thought i was just dealing with reflux and now suddenly I am faced with a life time problem which has really left me feeling very down. If anyone else is dealing with this or knows anything about it I would love to hear from you
katie