For families navigating life with Alexander disease (AxD), knowing they are not alone on their journey can make a meaningful difference. We created our new digital children’s book, Alexander’s Not-So-Secret Diary, as a resource to help families see their experiences reflected in others and give newly diagnosed families a glimpse into the strength, resilience and connection that define the AxD community.
The book follows nine-year-old Alexander, who’s living with AxD, as he navigates everyday adventures – from going to school and making new friends to the moments and challenges that make each day unique. Inspired by experiences from members of the AxD community, the book offers a personal look at life with this ultra-rare, progressive and often fatal neurological disorder.
Told from Alexander’s perspective, the story brings AxD to life in a way that’s relatable and accessible for young readers and their families. Alexander’s Not-So-Secret Diary celebrates what makes each of us unique and embraces the person behind the diagnosis. Though Alexander may seem different at first, his story is ultimately one of growing up, finding connection and honoring the things that make him special.
Download your free copy of Alexander’s Not-So-Secret Diary to follow his story, learn more about life with AxD and help spread awareness of this rare condition.