From Birth to One: The Year of Opportunity by Maria Robinson
If you read our blog, you know where this story started, you know what Batten Disease is.
Today she has us here, whispering reminders of her story in your ear, hoping you’ll pass it along. She couldn’t walk or drink water or scratch her nose. But she did impact the lives of people she never met. After she died, donation alerts flooded our mail slot. During a protracted recession, folks with deep hearts reached into short pockets and shared more than they should have. It’s a shame her impact must continue posthumously, but it still speaks to the power of a single life and the influence a little girl can have on an extended network of people. We’re hoping that this weekend, some of you will have time to share Celia’s story with someone new. That through you, another story might emerge, a new ending might begin. The profit-driven realities of the pharmaceutical industry mean that there isn’t nearly enough research into Batten. Supporting BDSRA means enabling promising studies to continue.
So she has us here, motivated to prevent other families from having to experience the same heartbreak. She has us here with fists full fight, with minds full of words (whether they’re the right ones or not) with lungs full of breath and hearts full of hope. She has us here asking you to help us continue to raise awareness, so that funds for research, and an eventual cure, might follow. So that we can, together, put an end to Batten Disease.
JEB
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