What exactly is ATR-X and how old are your sons now? How are they doing?
David,
ATR-X is an extremely rare genetic disorder carried on one of the mother’s X
chromosomes. There are currently less than 200 known cases in the world. The
disorder only affects boys. Their older sister has a 50/50 chance of being a
carrier of the defect. Both boys are severely developmentally delayed and
non-verbal. They can hear perfectly and do understand a lot of spoken
language. They use a limited number of signs and gestures as well as some
vocal expressions. They are happy and very entertaining most of the time.
The small things in life keep them entertained. Barak “Bear” is 13 and love
beads, necklaces, chains, stuff animals, and wants to go somewhere-anywhere
all the time. They are both very social. Zechariah, my 11 year old, loves
people and when we go out he has to get everyone’s attention. He uses all of
his signs with them. They are not proper “sign language” but signs that we
have managed to get him to use. He communicates “Please,” “Eat/Drink,”
“Daddy,” “Push the buttons on the TV/VCR,” “Yes,” and “love.”
They are angels living among us. They have no idea about tomorrow, next week
or next month. They don’t worry about where there next meal is going to come
from. They don’t know evil and the evil of this world can not corrupt them.
They seem to have a very special relationship with God and he has marked
them as belonging to him no matter what this world tries to do. They love
unconditionally and laugh a lot. And, they share this with everyone around
them. They live in a much nicer world than the rest of us. S
They are both doing very well. School will be ending soon and it is hard to
find ways and things to keep them occupied. They love and need the routine
of school. It is hard for me to have a set routine here at home. I have
always be a very spontaneous type person and can change plans/directions in
a second. It is also hard to plan for their care so I can continue to work.
Anyway, I’m sure this is probably a lot more information than what you were
expecting but I seem to be in the mood to open up and share more than
ususal.
DHughes
----- Original Message -----
From: “david krepps” ra-cpt3154@lists.careplace.com
To: dhhughes@globalhealthnetwork.org
Sent: Tuesday, May 08, 2007 2:43 PM
Subject: [ra] For David Hughes regarding ATR-X