[ Post a Response | 22q Deletion Interest Board ]
Posted by Karla on 7/2/2008, 8:37 pm, in reply to "Re: 22.11 deletion"
69.51.172.126
Hi Kayleigh,
My nephew, Will, has 22.11 deletion, is 3 1/2 years old and its funny that had he been born a girl his name would have been Kayleigh, exact same spelling!!
Just this week we had a Specialist tell us that his cleft pallate was more than likely inoperable.
Now we have not yet gotten a second opinion, but I was wondering if there is any other information that you could give me concerning the surgery you had...if you know of any specialists, centers, doctors, anything that could help.
The first doctor implied that Will would probably never talk...he makes many different grunts, hums, sounds and with some you can make out the word or the name that he is saying just by the way he hums it. He has been learning sign language for a little less than a year...and you can tell he is ready to communicate more with the world.
He has had other aspects of the 22.11 deletion that have been corrected with surgeries and so far this seems to be the biggest hurdle.
Any information anyone else could help us with would be greatly appreciated.
Thank you.
Sincerely,
Aunt Karla
--Previous Message--
: hi i just read your messgae i have 22q
: but in different areas. i am 20
: years of age. got diagnosed when i
: was a teenage. i have had a cleft
: pallet and ended up having an
: opperation which went successfully.
: i also have curvature of the spine
: and have had an opperation for that.
: if you would like to get in touch
: and find out more please dont
: hesitate to contact me via my email.
:
: thank you
:
: kayleigh barnard
:
:
:
:
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