Duel Dual

Batten. Battle. Ironic, how similar these two words are. Most days it feels like a war, but we're weaponless against the disease.
Recently, Andy started referring to our family members, the group of people who keep Celia overnight for us when Andy works, as Celia's Army. They've all memorized the pharmaceutical drill, have tactics for keeping her comfortable, and gallantly report for duty week after week.
And she fights. She fights with the strength of a much larger girl, her perseverance is remarkable, but her arsenal falls short.
The only way we can conceive of combating the disease is to help raise awareness of its devastation. We wrestle with the idea of whether we should ask others to help. We wrestle with lots of things young parents shouldn't have to - decisions about drug trials and end of life care, genetic counseling and funeral planning, investing in medical equipment and asking for donations in a struggling economy...
But if we don't ask for help, we remain weaponless. And that's a tough place to be. So, this post serves dual purposes. It makes us feel better, because it gives us a chance to feel like we're doing something, and it gives you, our readers, our extended infantry, something to do too, if you're willing. This weekend, June 6th and 7th, are the second annual Batten Disease Awareness days. Would you please consider one or both of the following, to help us raise awareness?
1. If you read our blog, you know about Batten Disease. Please mention Celia's story to someone else, someone who may not know about Batten Disease.
and
2. Visit the BDSRA website. There are ways, described there, you can contribute - using your KrogerPlus card in Ohio or ditching Google for GoodSearch and setting BDSRA as your charity, for example - that don't require you to spend a dime, but that can support further research, vital to combat the devastation of the disease.

Jenni & Andy