Sturge-Weber affects the brain, skin, eyes and other parts of the body. It is super rare. It also causes stroke. And it seems that a lot of Sturge-weber patients get cancer. There are learning disabilities because of all the seizures and blindness too. Some have such pain in their eyes that they have to have the eye removed. Thankfully Christopher still has his sight. He is mildly learning disabled. But he reads, writes, and loves to sing. His reaction time is so very slow that he will never be able to drive.
Christopher use to have 35-40 seizures a day. Christopher has the most rare form of the disorder. The port wine birthmark covers 85- 90% of his body. Most only have it on their head and face and some don't have the birthmark at all.
Please pray that the surgery goes well for this precious little girl.
Thank you for all the prayers for Christopher. Still no news, but no news is good news?? I love you all so very much. =)