My Worst Fear

My worst fear was realized last week. A precious child with Sturge-Weber Syndrome passed away.  That she was not my child makes it only a tiny bit easier to bear.  It was someone's child and the pain is unimaginable.  I cannot put the thought away. What if??????

When children pass away from Sturge-Weber Syndrome it is almost always from a sudden, intractable seizure, often in the middle of the night while they sleep.  Most of the time, the sudden death occurs in a child whose seizures are thought to be well-controlled.  In other words, it comes like a thief in the night.  Sweet little Ava dressed up in her costume on Halloween and a few days later she was gone.

My heart goes out to Ava's family.  When I first learned of the news, I wanted to know exactly what happened, as if I could then prevent it happening to Angie.  Now, I know that the less I know the better.  No good can come from having details to run through my mind.  I refuse to start getting up in the middle of the night to make sure she is still breathing or to limit her time away from me "just in case".  Sturge-Weber will not steal my peace.   I have always known that each day we have with Angie is a gift.  This news should not make that any more or less true.  We still have a miracle and God has predetermined how long and how full her life will be.

I would ask you to stop and say a prayer for Ava's family tonight.  They have suffered an unimaginable loss and their lives have been forever changed.  Ava has several older siblings, like Angie, and they miss her horribly.  Please pray for their peace.

I hate Sturge-Weber Syndrome and hope for the cure that is so close.  Unfortunately, it is a rare disease and research is not well funded.  There are doctors devoted to finding a cure, though, and they are getting close.  Seven years ago I had never heard of SWS and now it is my worst enemy.  I am up for the challenge and I will keep fighting until a cure is found.