Do you know this guy?
Many thanks to Tina Bale, mum to Dannyage 14
(48, xxyy) for writing the following article..

.
I'm looking for some very special guys...guys who
have a genetic disorder known as xxyy, also
sometimes known as a variant of Klinefelter
Syndrome (xxy). But here's the thing...it's entirely
possible (and probable) that nobody knows they
have it. Unless a boy has had genetic testing
(a karyotype), he may go most of his life without
knowing the true nature of his problems.


Here's what he looks like

He is well above average in all growth charts.
He might have flat feet and his elbows may appear to
be displaced. His pinky may be curved. He has very
little body hair. His sexual development is stu't pʑfsɂy'O"D)@/  fx])XEN:a `"e\XC4`d DT0E-b\(@(D +8 y'rxNbq 8u>׉1@0yhis teeth, even beyond the fact that you can't
get him to brush them (he may not have gotten all of his
adult teeth).


Here's how he behaves

He has miId to severe behaviour outbursts that are
unexplainable. He is moody, especially if he is over
9 years old. He does a lot of 'magical thinking'...maybe
he believes he will build a rocket, maybe the car of
the future...but he talks about it a lot, whatever it is.
He tells many tall tales. He can't stand loud noises and
may be hiding under his desk at school. He has very
few friends. His judgement is poor. He has a great
deal of difficulty with personal hygiene. He seems to
navigate to a younger peer group, possibly 4 to 5
years younger, sometimes more. He may really like
computers, video games and cards, even if he
is 20. He often may seem like he is 'in a fog'. He may
have obsessive behaviours of various types. He is
mildly to severely impulsive.


Here are some of his developmental issues

He has mild to severe speech delays.If he is older,
he seems to have a great deal of trouble organising
his thoughts and often starts stories in the middle
or rambles on a lot. He probably walked late. His
potty training may have extended to even age 9 or 10,
or he may never have gained control of bed-wetting.
He is low on the scale of most developmental
milestones, like sitting up.


Here are some of his school issues

He may be borderline in terms of IQ and when they
test him, he is all over the place. He has a great deal
of difficulty with word retrieval. As time goes on, he
has difficulty keeping up with his peers and may not
know how to read. Everyone knows he needs help, but
it's hard to identify his issues clearly. Homework time
may be gruelling. He has trouble writing. His teachers
may complain that he is 'not compliant'. He may have
qualified for special ed, maybe not, but there never
seems to be a 'right' placement for him.


Medical problems he may have had

Seizures, heart problems, bone problems, abnormal
EEG's, hernias, undescended testes, asthma and
allergies, asperger syndrome and autism, ADD, speech
delays and hand tremors.

My son Danny is now 14 and was diagnosed with xxyy
in June 2004. As a single parent of two, I've had
endless battles with teachers, social workers, medical
staff and family. All with negative impact on my
family. Danny was always put in the 'naughty boy
category' and I was told I had bad parenting skills.
But after a karyotype blood test, it turns out I have
a very special young man.

They predict xxyy occurs in one in 17,000 to 50,000
live males. In general, sex chromosomal anomalies are
rather common. There are xxyy guys out there with
behavioural and emotional problems going
undiagnosed, struggling through life with no support.

If you would like more information or know of a xxyy
guy or parent/carer, you can contact me at
xxyymum90@yahoo.com. There's also factsheet with
more information about xxyy' which is available from
me or by contacting Ian Hall at the Children's Fund on
01162495680 or e-mailing ian.hall@nch.org.uk

This article appeared in the newsletter for the Children's Fund in England.  United States families can visit www.xxyysyndrome.org or e-mail us at info@xxyysyndrome.org for more information.  Our phone number is 303-400-3456 or 888-503-3456.