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Receiving a diagnosis of 48 XXYY evokes different responses in different parents: medical information given to parents is scary and some parents feel relief in finally having an answer to their son’s difficulties, while others are filled with fear about their boy’s future.
It is important to know that most of the research you may have been shown on XXYY is not only outdated but also was conducted on prison populations, and thus produce some alarming and erroneous conclusions. Most are also single case-studies which may not reflect the XXYY population as whole.
The goal of the XXYY Project is to change that.
Whether you are an expectant parent of an baby with a diagnosis of 48 XXYY or have just received a diagnosis, other parents are here and willing to support you. Connecting with other families affected by XXYY Syndrome is essential in building the support system you will need, and learning about this rare disorder. Please contact us to join our parent network and gain access to the information and advice you need.
What the XXYY Project provides for families
Members of the XXYY Project have access to support and information about XXYY. The XXYY Project produces important literature, holds educational events and fosters research that can help parents to help their sons such as:
- Papers to address his educational needs
- In-depth information on transition planning for adulthood
- Papers about dealing with behavior issues
- Research initiatives such as patient-centered approaches to care and adults with XXYY
- World-wide events
The XXYY Project also still operates our original listserv called the XXYY Parent Network, where parents discuss day to day life with XXYY and receive support. Please contact us for information about joining our group.
The following poem was kindly shared with the XXYY Project by a parent:
THERE IS A BOY
IN MY LIFE, THERE IS A BOY, WITH EACH DAY COME NEW STRUGGLES, AS AN INFANT, HE STRUGGLES TO SIT UPRIGHT, A SIMPLE SOUND LIKE MAMA ON THE TIP OF HIS TONGUE, AS A TODDLER, HIS TINY LIMBS ARE CLUMSY AND AWKWARD, CRAWLING IS A CHORE, WALKING SEEMS LIGHT YEARS AWAY, AS A PRESCHOOLER, WITH MUCH FRUSTRATION, THE WORDS COME, THE BOY LEARNS TO RUN, TAKES AN INTEREST IN THE WORLD AROUND HIM, AS A FIVE YEAR OLD, THE WIDE EYED STARES OF OTHER CHILDREN, TELL HIM HE IS DIFFERENT, THE FRUSTRATION MOUNTS AND THE FRUSTRATION TURNS TO ANGER, AS A SIX YEAR OLD, PEOPLE COME AND GO IN HIS LIFE, EACH ONE PLAYING A DIFFERENT PART IN THE SLOW PROCESS OF LEARNING, AS A SEVEN YEAR OLD, THE LASHING OUT AND THE LONELINESS TAKE HOLD, THE BOY IS SWIRLING IN A VORTEX OF UNCONTROLLABLE EMOTIONS, BUT AS EACH NEW DAY BEGINS, I TAKE HIS HAND, TO GUIDE HIM ON THE PATH I KNOW HE WAS MEANT TO FOLLOW, TO GIVE HIM THE STRENGTH I DRAW FROM DEEP INSIDE, I LOVE THIS BOY, FULL OF COURAGE AND DETERMINATION, THIS BOY, MY RAY OF SUNSHINE, MY SON
By Jenn, mother of Tyler, 48 XXYY and Alyssa