Ronan was diagnosed with Tay-Sachs disease when he was only nine months old. His mother captured their experiences as the family took this unimaginable journey together with Ronan, nicknamed “little seal.” His family posted this note:
Ronan passed away peacefully on Thursday, Feb. 15th at about 3:30 am in Santa Fe. He was surrounded by friends and family. If you would like to make a donation in Ronan’s memory, please do so at the National Tay-Sachs and Allied Diseases Association, who have been a huge support to Emily and her family.
Here is more about the heartbreaking story that Rapp recounts in her memoir:
Ronan was not expected to live beyond the age of three; he would be permanently stalled at a developmental level of six months. Rapp and her husband were forced to re-evaluate everything they thought they knew about parenting. They would have to learn to live with their child in the moment; to find happiness in the midst of sorrow; to parent without a future. The Still Point of the Turning World is the story of a mother’s journey through grief and beyond it.
(Via Sarah Weinman)