another Awareness Weekend

Her first breath took ours away.
When she was born, we were euphoric. And she was extraordinary. It was like a baby girl had never arrived so perfectly, red hair, long eyelashes, porcelain skin, chubby thighs. She was beautiful. That’s secondary, but still. She was the kind of pretty it almost hurt to look at.
We knew so little then, about the fragility of life, about the endurance of love. Sometimes, now, seeing that innocence in other people sucks the air right from our lungs. They may never know. How lucky to never know.
Celia left here long before the day she died. Bits of her faded and fell away, disappeared altogether. We watched her life unravel, we watched our daughter suffer and then we watched her die.
Her last breath took ours away.

Did you have that reaction when you heard about Batten Disease, the one I think most humans get, especially parents, that Please, never, not me, not my kid aimed fast at heaven - combined with the red-hot empathy that slices through you when you understand a nearby soul has already fallen into one of your worst fears, and for them it is real and forever?
Maybe you’d like to give to BDSRA. Give so that her suffering, so that your sympathy, can become another family’s salvation. When awareness is turned into action, when it is followed by funding for research, science can unlock mysteries that may improve the lives of many.
Put your money where the miracles are, let your dimes and dollars help deliver the breakthrough we believe in. Visit www.bdsra.org to contribute online.
And if you can’t do that? Tell a friend about Batten Disease or whisper her name to the wind, but please, breathe a little life into her story today.