When Eleanor & I were gone last week, Drew & John worked on our new back yard deck. Eleanor & I came home to this!
Eleanor was pumped up and loudly impatient about getting in the water. Quietly wait your turn? Yeah, Eleanor didn't get that memo. We're working on it.
She squealed "Bye water!" when we went into the locker room to dry off. She cried like I was torturing her as I peeled off her wet suit & put on a dry diaper and dress. She freaked out when a lady in the locker room turned on the loud hand dryer. Then she busted out the front gates and danced around with joy like she had totally crushed that swim lesson.
This is the email I received from their organization in the spring of 2015:
... I want to personally thank you and your husband and
> let you know more about the research that has been possible only through
> your extraordinary donation. Your family¹s courage and commitment enabled
> us to make strides in our understanding of how the brain is damaged in
> PKAN. We now know that the tiniest blood vessels that carry essential
> nutrients and oxygen are progressively damaged, leading to a slow
> starvation of certain nerve cells in the central part of the brain. This
> breakthrough gives us a window into how brain cells die in PKAN and how we
> might circumvent this nutrient starvation to effect a therapy.
> Our research program spans from the laboratory to the clinic, always with
> an eye to improving the lives of children and families affected by PKAN.
> We come to work everyday to cure PKAN; that is our singular goal. We are
> interested in science, but we are intent on curing this disease. Your
> family is helping.
> I wanted your family to know that Emma is teaching us important lessons
> about PKAN. She is leading us to answers that will help families, and she
> will teach us long into the future. Thank you for your wisdom and courage
> in making this work possible. The whole PKAN community is grateful.
I'm telling you all of this for a really BIG AWESOME reason. Last week the NBIA Cure organization made a huge announcement that could be life changing for current and future PKAN families. Y'all... this could be HUGE. It's not a done deal and there's much left to be done, but they've made huge strides and there's a very real possibility that they have found a new compound that erases all signs of disease in brains with PKAN. I don't know that her brain led them to this specific discovery, but at the very least we know that they learned from her and that she was part of the process to get to this point. You guys. I cried and cried when I read this. It's too late for my girls, but it's not too late for many others. I'm praying for this discovery and the scientists & doctors involved. I'm praying for the continuing process in the laboratory, with the FDA, for ample funding, and for the children & families that are hoping it all comes in time. Read the article HERE and please pray with us.