For us, right now, Batten Disease is life.
For too many families Batten Disease has already meant death.
Right now, we can't be sucked into the siren-song of finding a cure. Right now we're standing firm in the necessary work of just being with Celia. We don’t want to look back and wish we had done less, had spent more time with her. Neither do we want, when we see her again, to have to apologize for not trying everything. Right now we're just doing the best we can to live with a disease that steals time and squanders possibility.
June 5th and 6th are National Batten Disease Awareness days. We don't have big plans for raising awareness this weekend, but we'd appreciate your help. Do you have time, right now, to spread the word about Batten Disease to at least one person you know?
Please tell them about Celia. And ask them to Search on.
JEB
2 comments:
Mission accepted! And we think you're doing an amazing job at finding just the right balance.
much love, as always. already shared it on facebook.
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