Monday, September 01, 2014

Books and Resources

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LANDMARK, MUST-HAVE GUIDEBOOK,
Living with Klinefelter Syndrome (47,XXY) Trisomy X (47,XXX) and 47,XYY:
A Guide for Families and Individuals Affected by Extra X and Y Chromosomes




Written by one of AXYS’s long-time members, Virginia Isaacs Cover, the book provides a lifespan approach to the three trisomy conditions, Klinefelter Syndrome, Trisomy X, and 47,XYY Syndrome, as well as their less common tetrasomy and pentasomy variations. Ms. Cover draws on her years of experience as the parent of a young adult with 47,XXY, as an advocate, and as a social worker involved with children and adults with developmental disabilities, to research psychosocial and medical issues affecting this population. 

The 200 pages of the guide provide clear explanations of the genetics involved in the conditions, as well as diagnosis and disclosure, development from infancy through early adulthood, potential health issues, and educational and psychosocial considerations. 

For more information about the book, click here.

FOR A LIMITED TIME, THIS BOOK IS FREE TO US ORDERS as an accompaniment to the Family Information Kit.  Place your order here.

CLICK HERE TO PURCHASE Hard Copy

CLICK HERE TO PURCHASE e-Book

CLICK AQUÍ PARA DESCARGAR LA TRADUCCIÓN ESPAÑOLA GRATIS


Author P.A. MooreCourthouse Cowboys -
A Modern Tale of Murder in Montana


Note from AXYS:  This important book explores the legal struggles of a man who has Klinefelter Syndrome.

About the book
          Murder dogs Jack and Paige Defalco from their days as California prosecutors to their newfound careers as Montana defense attorneys. Never mind that they’ve uprooted their kids, caravanned 2,000 miles to the hinterlands of Kootenai County, kissed goodbye to their fat salaries, or vowed to avoid homicide.
          At Deer Lodge State Prison in 1999, murder sits before them in the guise of a skeletal, bloody-lipped, broken-nosed teenager who grins out one side of his mouth as he stares at them through a swollen eye. Evidently his fellow criminals brook no mercy for a convicted killer, regardless of his age or feeble intelligence.
          This kid’s parents have no money and the local legal eagles have warned the Defalcos to let the conviction stand … or else. Yet that threat, a gauntlet thrown down, fuels the couple’s addiction to criminal law. It makes them flip the bird at those in authority and go to trial anyway. So, as they return the kid’s stare, a silent agreement passes between them, a nod that conveys two decades of marriage and as many years in the courtroom. The Defalcos will defend mentally disabled Ben Stagg.
          Is it coincidence that soon thereafter anonymous callers threaten them? That the local media excoriates them? That the State Bar investigates them? Are they crazy to rat out the corrupt criminal justice system to the ACLU and the Montana Supreme Court? Are they foolhardy to challenge the powerful judges, lawyers, and cops who comprise the Courthouse Cowboys?
          And with the discovery that Ben Stagg suffers from Klinefelter’s syndrome, a common but rarely diagnosed genetic disorder, will a jury acquit him of murder when presented with a never-before-used insanity defense?
          This legal thriller rocks the reader with suspense, gallows humor, and a finale filled with redemption.

From the Author
          While I wrote this as a fictional memoir, much of the story is based on actual instances and cases occurring in my law practice here in Montana. The trial involving the disabled teen with Klinefelter's syndrome was featured on Dateline, NBC, City Confidential, Discovery, TLC, Rolling Stone, and Sports Illustrated.
          As you follow Paige Defalco's one woman quest for justice in small town Montana, you'll ride with her in the front car of the roller coaster, wondering if this former cynical prosecutor turned defense attorney will recover the soul she misplaced, 'somewhere between the Catholic Church and the Courtroom.'
          Thanks for checking it out and please let me know, through your honest review, what you think!
P.A. Moore
Reader Reviews
From Gary Glissman, Board of Directors, AXYS
          Definitely a "must read" for anyone involved with XXY or who has concerns about the current legal system in this country. It is a powerful story that deals with very raw emotions and I suspect it will challenge many personal philosophies people have about criminals, punishment, personal responsibility, the legal system and a lot more. It is a very personalized look at things we don't particularly want to think about or discuss and will likely elicit some strong responses on many different levels.
From Kathy Dunnehoff, Amazon best-selling author of The Do Over
          If John Grisham was a mom... he'd be P.A. Moore.
From Medic 319
          I was hooked by the story immediately. What a great read! I loved the author's writing style. I found myself easily connecting with the characters.

Radio Interview with the author

Discussing Courthouse Cowboys, Klinefelter's syndrome, and tons of information not covered in the book. Please SHARE and thanks to Ross Strausser and Big Valley Radio!
http://www.bigvalleyradio.com/News.aspx
Scroll down to the September 20th interview with P.A. Moore.

In early September, Author, P.A. Moore made the electronic version of this book available as a free download from Amazon.com.  Response was overwhelming, with 14,333 copies distributed in just 72 hours.
Get your electronic copy for just $3.99 or paperback copy for just $15.49

Books on X and Y Chromosome Variations from the eXtraordinarY Kids Clinic

The eXtraordinarY Kids Clinic released a series of four books for children with X&Y chromosome variations. The books are designed to help children with X&Y chromosome variations better understand their diagnosis and to help parents talk about it with their child. The books have been developed to be read with school-age children up to 13 or 14 years old, however many adolescents may also identify with the experiences of the character in the book and understand their condition a little more. The stories follow a child through their busy day, while exploring the genetics and various social, academic and medical aspects of the condition.







Click to order Gregory and his Extra X

Click to order Elizabeth and her Extra X

Click to order Kyle and his Extra X and Y

Click to order Jack and his Extra Y












Proceeds from sales support the eXtraordinarY Kids Clinic and further research on X&Y chromosome variations.
 
* The eXtraordinarY Kids Clinic hopes to produce additional books for other variations as well (such as XXXY, XXXXY, XXXX, and more), however these books are not yet available.



'Girl with an extra-X'
by Diana Dekker

I have created this book especially for very young children with an extra X-chromosome.  
There are 25 pictures and 25 pages with text in the book. 

There aren't just happy subjects in the book, because sometimes it isn't fun at all to have an extra X-chromosome.  
Even though I made the book like it won't make you sad but make you see that it's just the way it is.

Click images to enlarge.


'An Extra X in Your Genes'
 by Diana Dekker

This book is telling my personal story about learning to deal with several symptoms of the Trisomy X syndrome.  It is the English translation of my Dutch book 'Een extra X in je genen'.  Like my Dutch book it will be printed in Arial 18.
 
After I published my book 'Mijn extra X', which is only in Dutch at the moment, many people asked me to write my personal story in another version, which will be more understandable to children and people who have problems with reading 'normal' books.

So I did...
 

Click here to order.
Click here for alternate ordering site.
 
Sample from the book:
 
"Chapter 6
Twinges and tingling in my body
I am not able to run very fast.
I get tingling in my ankles.
I also have problems catching a ball and often don't.
I feel twinges in my wrist.
I don't always see the ball, especially when it comes fast to me.
 
I am laughed at by my classmates.
My teacher says that I must not do so pitifully.
They think that I don't really have those aches.
They think I make it up.
 
In class the wooden chairs bother me sometimes.
They hurt my back.
I feel tingling in my knees.
Sometimes my head aches.
I see white spots in front of my eyes.
 
Next to the letters in my book I see a white edge.
I have to concentrate very hard.
It pays me lots of effort to read out loud.
I often read the wrong words.
Then I am laughed at again.
 
I often feel nauseous and don't feel strong.
 
Fortunately I do succeed to play alongside my classmates sometimes.
They play football with little pawns.
I like this kind of football a lot.
For a little while I can belong to the group again.
I don't have much strength in my arms and legs.
For example throwing a ball fast is very difficult."
 
All questions are welcome at: dianadivera@gmail.com

  
Copyright 2014 by AXYS