Tuesday, June 12, 2012

Angel Wings

The Angelman Community uses a lot of word play around the idea of "angel wings." Some funny, most sweet. But there is one use of those words that none of us like to hear or use. One use that is devastating to us all and brings back the harsh reality of just how awful and unfair Angelman Syndrome can be sometimes. I learned this afternoon that another child with Angelman Syndrome, a precious little girl named Kelce, is going to earn her real Angel wings on Thursday when she is removed from life support following a long and horrific battle with uncontrollable seizures.

Thankfully, news like this is few and far between. But AS, while it is not progressive or degenerative, does claim too many lives. Lives of precious, innocent people like my Ava. I will never forget a little girl that died very suddenly the week that Ava was diagnosed. She had a bowel obstruction that was caught too late. And I remember being so, so scared that, as a new member of the AS community, I would hear too many stories like that one. Thankfully, they are rare. Sadly, they do happen.

I ask that you all please be in prayer for Kelce. Pray for a miracle. Pray for comfort for her family as they have made the most difficult decision and face the most difficult week of their lives. I do not know them personally- only from the online AS community. But they are so brave and have faced this with grace and love for their sweet girl. Life isn't fair. Angelman Syndrome sucks. But GOD is always good and always faithful. And while her earthly body has been ravaged by seizures, I am so thankful that a perfect, seizure free, AS free body and mind await sweet Kelce.