My 2 year old daughter was born with a "port wine stain" that just about covers her right leg and goes up her right side of her pubic area as well as her right butt cheek. This was thought of as no biggie.. it actually seems to be fading as she has "filled out"…

This was no concern untill about 3 weeks ago when I noticed after her bath, that one leg seemed a little wider than the other. I broke out the measuring tape and began measuring. I noticed that EVERYTHING about her right leg was bigger than her left. Even the lenghth was off. I took her to a Pediatric Orthopedic Surgery Dr, who confirmed with x-rays that her right femur is 1 cm longer and her right tibia is .5 cm longer, making her right leg 1.5 cm longer than her left leg. Up to 2cm is considered to be normal, but for her to be off already, makes us believe that this will just progressively get worse. We are going to Cedars-Sinai Genetics Clinic as soon as they can get us in..( i filled out a questionaire and faxed it in today)

I know this is a very RARE condition as the stats say it affects like 1 in 20-40,000 children… but I was wondering if there is anyone who has a child with this, or if anybody reading this has this syndrome?