It was with great sadness that we heard the news this morning of the passing of Emily Rapp’s son Ronan. Ronan suffered from Tay-Sachs, a genetic disease caused by the absence of a vital enzyme called Hex-A, which causes cells to become damaged, resulting in progressive neurological disorders. Rapp’s most recent book (and our Rumpus Book Club selection for this month), The Still Point of the Turning World, takes the reader through this experience, through what Cheryl Strayed described as “the way a woman loves a boy who will soon die.”
Emily has been a part of The Rumpus for a while now, having written for us three times over the last year, and we share her loss.
Emily Rapp posted the following on her Facebook page this morning: “In lieu of flowers or cards, please make a donation to the NTSAD – www.ntsad.org — in honor of Ronan as well as all the other children and their parents who have suffered from and continue to live with this disease. Thanks.”
We send you all our love, Emily.
One response
Emily and Rick created family for Ronan that spanned the globe. He will be remembered and great good is being done in honor of his life, and through this love, we are all learning to be better human beings.
I pray for their continued strength and courage during their long walk through the fire of grief.
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