Ronan, a brave child who battled an incurable genetic disease, has passed away. His mother, Emily Rapp, wrote about her life with Ronan in the upcoming memoir, The Still Point of the Turning World.

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.

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