Some of the most amazing kids are dying.

February 28th is World Rare Disease Day.
Six years ago we didn't know much, or care enough, about rare diseases. Now we know: 30 million Americans suffer from rare diseases, which impact more people than AIDS and cancer combined.*
Six years ago, almost, a child was born, our family’s dearest doll.  Although we’d asked them not to come, the grandparents and aunts ended up in the lobby of the maternity ward that day.  They passed the time making bets about when she’d arrive, how much she’d weigh, who she’d look most like.  No one wagered she’d have red hair, and everyone tossed a few dollars toward whatever they felt most convinced.  The money was to be the beginning of her college fund.  We have the notes and the cash stuffed in a clear sleeve in her baby album, right next to pictures of the waiting room festivities.  On the next page are photographs of her pink, wrinkly body.  Brand new, she seemed to epitomize the possibility of everything.  Family flooded the delivery room, and no one really cared what color her eyes were or how many inches she was in length.  She was perfect by every measure.

About six years ago, a young teen in Nevada spent family vacations wandering scrublands prospecting for uranium and shopping secondhand stores for lab equipment, hoping to build the fusion reactor he thought could make his grandma's radiation therapy more effective.  His grandmother was dying of cancer, and because they lived in a remote area, it was hard to get radioactive treatment to her before it decayed.  He did develop an effective medical isotope application, and then he set his sights on detecting explosive materials in shipping containers, the easiest entry point for weapons of mass destruction.  He's currently working with the Department of Homeland Security on a highly sensitive nuclear detection system.  "Someone like Taylor,"  said the then under Secretary of Energy Kristina Johnson, "comes along maybe once in a generation.  He’s not just smart, he’s cool and articulate.  I think he may be the most amazing kid I’ve ever met.”**

Some of the most amazing kids are dying.  And some of them are developing treatments and saving lives. 

**the boy who played with fusion


Emma! said...

Thinking of your family today. Thank you for the beautiful post. The article about taylor was absolutely amazing and I enjoyed reading it so much.
Thank you for sharing your memories of Celia and your daily life with complete strangers.

Beth Ann said...

Funny how things seemingly unconnected overlap. February 28th would have been my brother's 32nd birthday. Childhood leukemia isn't a rare disease, but it took him all the same. No matter rare or common, you are absolutely right that the world has lost way too amazing kids to disease. Thanks for making me aware that his day is special for some other pretty important reasons.