Sunday, January 15, 2012

Batten Disease is mean

Please pray for my friends, Jenni and Andy. Their precious little girl, Celia, died this afternoon. She had infantile Batten Disease, just like Emma. I know they are extremely happy now, playing, running, jumping, flying. But I know too that Mom and Dad now have a whole in their hearts, one that will probably never completely heal.

Please remember all the families who have lost children to Batten Disease. There have been a lot lately. Batten Disease is mean. Like someone on my friend's blog said, "it plays dirty..."

Dirty:
-unethical
-not sportsmanlike
-unpleasant
-extremely unfortunate; thankless
-stormy; rough

Batten sure does play dirty.
Yes, it does. I fully believe a cure is insight. My heart aches deeply that Emma and Celia and so many others like them will not benefit from a cure, but I am hopeful for ones like Will and Christiane. Please continue to support the efforts of Batten Disease Support and Research Association and Beyond Batten. Tell your friends about Batten Disease. Encourage your representatives to give more funding to rare diseases. Participate in fundraising events. Do what you can. And remember to pray for miracles and believe they can happen.

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