One dark and stormy night over the summer the paramedics went up our street. A few minutes later a second ambulance followed. They went to the house at the end of the street where our neighbors were expecting a baby. I didn't really know them all that well, but knew enough to know that the baby was not due for several more weeks.
It turns out that Quinn was born four weeks early, but seemed to be in relatively good health, all except for a few blisters that were on her hands that they thought were from her sucking on her fingers. We saw her when we were going for a walk and her dad, Mark, was walking her up and down the driveway.
Turns out that her blisters weren't from sucking her hands. They are from a rare, genetic disorder called Junctional Epidermolysis Bullosa - Herlitz, or EB for short. Basically, the layers of her skin do not fuse together like normal skin causing blisters that are then treated as if she is a burn victim. It is intensely painful and causes scarring wherever a blister has formed. They call these kids butterfly children because their skin is as delicate as the wings of a butterfly. You can get more information here.
This beautiful baby is the youngest person to undergo a Bone Marrow Transplant for this disease. She is amazing in her strength and determination. She has done better than we could have hoped for in her progress but is now experiencing a setback. What is as amazing is the faith that her parents are displaying. I am not one to say that someone is in my prayers. I think it sounds so trite when people say this. I always wonder how many people say that and then go on their way and never really think about it again. Mark and Mandy have shown me what it means to really have God in their life to give them strength. Every day they are in a hospital room with this child who is in a horrible amount of pain, and they face that pain and do everything they can to make it better. They do not flinch when doctors come in and tell them they don't really have the answers they need, and are not really sure what is coming next. They are dealing with the helpless feeling of knowing there is not a lot they can do for Quinn but to be her voice.
As much as this post is about Quinn and the need to raise awareness to this horrible disease, it is about watching my neighbors show me how to walk in faith; to not question how the God they so love could inflict this pain on their beautiful baby. They have shown me that life is not fair, but that it is what you make of the situation that is presented to you. It is by watching them that I can actually see one of God's plans in action. There are no parents that would be better able to deal with this than Mark and Mandy, especially with the grace and patience that they are showing. This baby is also touching thousands of lives through the Caring Bridge website that they have working to get the word out on her condition.
I am proud to be part of Quinn's butterfly army but it is my prayer that I can resign my post when they find a cure, or at least a way to manage it better then they currently do. It is my prayer that Quinn can have a day without pain, and that Mark and Mandy can have a moment to enjoy their daughter instead of worrying about what is over the next hurdle. These are really my prayers, and I am not just saying that.