是什么让罕见病儿童非同寻常？ 聆听罕见病儿童埃夫伦自我成长的心路历程，探索问题答案！ 本书由母子联手创作，基�

"This book is about the struggle to save the lives of children who, because of a roll of the genetic dice, are born with any one of more than several thousand r

LOS ANGELES TIMES AND PUBLISHERS WEEKLY BESTSELLER • The powerful memoir of a young doctor and former college athlete diagnosed with a rare disease who spearh

An Ordinary Day is a documentation of the personal lives of courageous kids who have rare genetic conditions and their families who love and support them at all

John Green's The Fault in Our Stars meets Rainbow Rowell's Eleanor & Park in this darkly funny novel from the critically acclaimed author of The Beginning of Ev