Ronan Christopher Louis, the son of Emily Rapp and her husband Rick Louis, passed away peacefully this morning at 3.30am in Santa Fe, New Mexico, the victim of Tay-Sachs disease. I hope for a quiet rest for Ronan, and my gentlest thoughts are with those he left behind. I have been following Ronan’s story on Ms. Rapp’s blog for several years; it is hard to express my feelings about this, though I imagine they are not unlike those of any parent who is aware of this story; I will hug my children closer to me tonight.
Ronan’s family is asking that donations be made in his memory to the National Tay-Sachs and Allied Diseases Association.
Ms. Rapp’s essay in the 15 October 2011 New York Times, “Notes from a Dragon Mom,” inspired some musings about a play I planned to write called Erlkönig, which I started and even may finish one day. Ms. Rapp’s book about Ronan, The Still Point of the Turning World, will be published next month by Penguin.