My name is Jen and I am mom to Quinn 21 Months who has PHACES. I run the PHACES support group and the PHACES families website
Please come to this group and join, I will approve it right away.
My email is email@example.com
These tests are very necessary and needed to rule in or out PHACES. It is very important that all children be evaluated for this disorder which can run from very mild to severe. ALl cases are different but it is very necessary to know what you are dealing with. We have many families whose children are at the very mild end and are having very normal lives.
Please feel free to contact me and I will help you in any way that I can.