Neurofibromatosis

[bound4meimei]

Hi,
I am new to the board. My name is Annie. My family is considering the adoption of a little girl from China who, most likely, has Neurofibromatosis 1. She is 5 years old and shows the signs of it: cafe au lait spots, what is suspected to be a plexiform neurofibroma, as well as tibial dysplasia. There is no way to tell the severity of it. We have done a lot of research on NF1 in the last week, and I think I am beginning to understand the basics of it. We are scared of it in some ways, how will it affect her, wha are the likelihoods that she could develop a tumor in the brain causing mental retardation, or a future tumor becoming malignant?... The questions and unknowns of this just keep coming.
Does anyone know if Shriners Hospital for Children treats NF1? We have experience from Shriners and they are just amazing. However, I haven't really been able to find a straight answer on if they treat Neurofibromatosis or not.
Any insight would be greatly appreciated!!!!!
~Annie