Thursday, May 5, 2011

Sturge Weber Awareness Month

Meet Brie, she has Sturge Weber Syndrome a congenital, non-familial disorder characterized by a congenital facial birthmark and neurological abnormalities, and she's perfect!

Brie's journey with Sturge Weber has been a rather mild one, which I credit to the grace of God. Our story really begins at the age one with a trip to the dermatologist, a trip that would bring us to a very scary diagnosis. There we learned Brie had a Port Wine Stain, a life long facial birthmark that can cause glaucoma, as well as, be an indicator of a seizure causing neurological abnormality known as Sturge Weber Syndrome. With tears in my eyes and fear in my heart I went home that day to share the news with my husband and family.

The dermatologist words changed everything, my worry was no longer just about Brie's emotional well being, but about her physical health too. Shortly after that fateful day we saw a Neurologist, had a MRI/CAT Scan and heard the words we expected to hear "Sturge Weber Syndrome". However, in that diagnoses there was a hope, the placement of her brain involvement may never lead to an actual seizure.

Time went on and Sturge Weber became almost a non-thought in our minds, until one day when everything changed. Four years without seizures and this January Brie was hospitalized with stroke-like sensory seizures. Since then Brie has been stable, seizure free and the happy-go-lucky girl we love. In fact she's blessed to be seizure free, glaucoma free and Port Wine Stain treatment free. As for me our week long trial this January has sparked a desire to educate myself in Sturge Weber research, and share our story with the world.

However, I would be remiss to share our story without sharing what gets me through each day of worry and grief--my relationship with Jesus Christ. While I choose to trust our doctors and their research, my ultimate trust lies in Christ and His Word. Scripture reminds us that Brie was "...fearfully and wonderfully made: your works are wonderful, I know that full well" (Psalm 139:14), while the doctor's may not have all the answers, God does. He perfectly crafted her in my womb, knowing very well these challenges would arise. Again I'm reminded of scripture, John 16: 33 says: “These things I have spoken to you, so that in Me you may have peace. In the world you have tribulation, but take courage; I have overcome the world.”--You see at the end of the day, my hope does not lie in the doctor's knowledge, but in Christ power.

If you would like more information on Sturge Weber or wish to make a donation to the foundation please visit the Sturge Weber Foundations website. If your family has been affected with Sturge Weber Syndrome or Port Wine Stain and wish to talk, please feel free to contact me at Sometimes it's nice to have a friend who can relate!

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