Writer Emily Rapp 's son was diagnosed with Tay - Sachs disease at six months old . As her son lived out his short life , she grieved through it . Rapp delighted in moments of happiness with her son and learned profound lessons .
Writer Emily Rapp 's son was diagnosed with Tay-Sachs disease at 9 months old . As her son lived out his short life , Rapp grieved through writing . Rapp delighted in moments of joy with her son and learned profound lessons .