Saturday, September 29, 2012

KNOWING ALEX: Life with Agenesis of the Corpus Callosum

This morning, as I was checking my e-mail, I discovered a note to all members of the ACC Listserv--(an Agenesis of the Corpus Callosum e-mail support group that I belong to). This particular e-mail, with a subject line: "Growing up with ACC", put a big smile on my face as I read it, and I couldn't get this blog post up fast enough to share with you here--not to mention get my own hands on a copy of the exciting, new e-book (electronic book).

With his permission, here is the e-mail--directly from him, with the surprising news that I just received, so you can read it for yourself:

My name is Alex Reisenauer I’m 24 yrs old with c-acc. My family joined this list a long time ago and this is my first time posting. After years of thinking about writing a book about what it’s been like to live with ACC and wanting to bring greater awareness about the condition to increase understanding, this month my book, KNOWING ALEX Life with Agenesis of the Corpus Callosum, has come out. I guess you can say it’s taken a life time to write. It’s co-authored by my mother, Cindy and tells how ACC has affected our lives. I have included the description of the book.

Publication Date: September 1, 2012

‘On the day their son was born Rich and Cindy Reisenauer were advised to institutionalize him. Alex had been diagnosed with frightening and unpredictable condition with the indecipherable name of Agenesis of the Corpus Callosum. Simply put, Alex was missing an integral portion of his brain—the band of nerve fibers that connects the two hemispheres.

The Reisenauers chose to take their newborn home to join his two brothers, and face the daily hardships and minor miracles of life with AgCC as a family. Every aspect of Alex’s condition presented developmental, medical, social, educational and vocational challenges. Hard fought for successes highlight his life of achievement.’

Right now its an ebook available at the following retailers: Amazon Kindle,
Apple iBookstore (for iPad), *
requires free iBooks app to view.
Barnes & Noble Nook,
Kobo, Copia and Gardners. It will soon be available at Baker & Taylor and Reader (Sony Reader). A print version should be available soon.

Mine is just one story. I hope as awareness for the condition grows more and more stories will be told until ACC is as familiar and understood by the outside world as other conditions like Autism.
Thank you for reading."
24 c-acc
 [c-acc=complete agenesis of the corpus callosum]

Would you like to know more about the new e-book titled: KNOWING ALEX: Life with Agenesis of the Corpus Callosum, co-authored by Alex Reisenauer, who has ACC, and his mother, Cindy Mauro Reisenauer?

Well, go ahead and have a look inside the book, where you can view the table of contents as well as read an excerpt.

If you don't have a Kindle, or other type of e-reader device, but still want to get the e-book and read it--You Can. The e-book is available to read on your computer.

Just download the free Kindle for PC or free Kindle for Mac to your computer. That free download will then allow you to purchase the e-book, KNOWING ALEX: Life with Agenesis of the Corpus Callosum, and have it delivered directly to your computer, for your reading pleasure.

Plus, you can also download other Free Kindle Reading Apps for Kindle Cloud Reader, Smartphones, and Tablets (i.e. iPad & Android Tablet). You don't need to own a Kindle device to read Kindle books.

Wow! I am excited to know that there is a book of this quality, and in-depth information, available that speaks directly about the diagnosis of ACC, and makes it incredibly personal, coming from the perspectives and viewpoints of a mother (and son-who has ACC) team!

Huge congratulations to both of you, Alex and Cindy, on your new book. I can already tell that this book will speak to so many people who read it....from parents who have a child with ACC, to teachers/school staff, tutors, to adults who have ACC, to new parents-to-be who are expecting a baby with ACC, as well as doctors and other professionals and more.

As a parent myself of an 18-year-old son, who is completely missing his corpus callosum, (and as someone who is currently reading KNOWING ALEX: Life with Agenesis of the Corpus Callosum, while nodding my head and relating to much of the story), I am certain that this book will be monumental and instrumental in creating a much-needed greater awareness of Agenesis of the Corpus Callosum, a condition that deserves to be better understood and recognized for the sake of the many people who's lives are affected (in a variety of differing ways) on a daily basis.


  1. WOW, Alex and Cindy. Have bought your book and only into the first chapter and wow, I thought I was reading Sarah (P ACC 13 year old) story. The auditory sensitivities and then listening to loud music, has us baffled as to why. Thank you for taking the time to put into words your experiences for us to share in. I am sure it will be helpful to other parents and individuals living with ACC. Off to get some more tissues and continue reading
    Thank you

  2. Eu já tenho a minha cópia!!!
    Minha família está muito empolgada com a leitura.
    Parabéns ao Alex e sua mãe Cindy por essa conquista.
    Sandie, obrigada por compartilhar!
    Um abraço carinhoso

  3. Olá, Alessandra!

    Obrigada por seu comentário lindo. Estou tão feliz que você tem uma cópia do livro! É um excelente livro - que é ao mesmo tempo surpreendente e inspiradora!


    My 10-1 comment to Alessandra translated to English:

    Hello Alessandra,

    Thank you for your lovely comment. I am so happy that you got a copy of the book! It is an excellent book -- that is both amazing and inspiring!


    Alessandra's 10-1- comment translated from Portuguese to English:

    "I already have my copy!!
    My family is very excited about reading.
    Congratulations to Alex and his mother Cindy for this achievement.
    Sandie, thanks for sharing!
    A loving hug"

  4. My mother has been reading through the book and will be passing it along to me soon. I have a 15 month old with c-acc and a separate diagnosis of Dandy Walker variant. I am a graduate student studying Creative Writing, so I have been considering writing something myself! I am glad there is now a longer term story out there, maybe I can take on a smaller issue!

    Can't wait to start reading!


  5. I'm ordering this book ASAP, Myborn with daughter was ACC almost 19 years ago. She will be graduating from high school in June and going to Western Michigan College in the fall. MaryElizabeth has always been a fighter and never asked why she was born this way. People with this condition have been breaking barriers everyday. I'm giving her this book on graduation day, So she will know that that there are many special people with ACC. Thank you for sharing,
    Nancy Schwall


I am very interested in reading your comments and
look forward to hearing from you. Thank you.