Maybe it's not whether you know someone with Batten Disease, or whether you know Celia. Maybe the question is whether we can afford not to keep asking. And that answer is easy.
I'm willing to bet that those who do know Celia would agree -- she is worth it.
Take, for example, the fifth and sixth grade students we recently heard about who, when they've found money at the bus stop or on the playground, turn it in, but when it goes unclaimed after a given period, instead of keeping it they ask to put it in the school's "Celebrate Celia" fund.
Or the cousin who has opened an Etsy shop, who enjoys painting and has expanded her work to include techniques - like using a fork instead of a brush - to create art that appeals to visually impaired people, even children like those with Batten, who are losing sight but can appreciate paint through touch instead. All of the profits from sales of designated paintings will go to BDSRA.
And at the grocery one day last week, where the lines were long and Celia's grandma let a young man holding only a greeting card go ahead of her. While they waited, he spied her reusable Batten bags and asked about it, several questions. After he paid for his card, he thanked her again, told her he has MS and that he hopes that finding the cure for one thing will lead to treatments for all neurological problems. He handed her all of his change "for research" and went on his way.
So many of you help us introduce Celia to the world. To those of us who know what Batten is, nine or eighty-seven or four hundred, any number is no worse than one.
One child is more than enough. One child is too much.
Keep asking.
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