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: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.
-extremely unfortunate; thankless
Batten sure does play dirty.