Writer Emily Rapp 's son was diagnosed with Tay - Sachs disease at six months old . And now , Ronan lives on in this touching book -- as agonizing to read as it is imbued with hope and light . 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 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 .