[ Post a Response | 22q Deletion Interest Board ]
Posted by Caryn B. on 3/23/2006, 2:29 pm, in reply to "Re: Anyone out there?" I have a daughter who is 5 years old and the medical field has been able to give good info in her very early years but information on specific learning disabliities, speech issues and some vague physical pain/ illness is still hard to come by and so I check here frequestly for parent postings and if I am lucky and adult VCFS or medical postings. Caryn B. --Previous Message--
64.211.101.4
I also check this board if not every day, certainly every week.
Mother to Samantha 5 years old with VCFS/22QDeletion/DiGeorges Syndrome.
http://www.caringbridge.org/visit/samvcfsstory
: Hey Amy, Thanks for responding. I
: also check the Board quite
: frequently and it has been very
: quiet. I guess that is a good thing
: though. I agree that it is very sad
: to know that so many people have the
: deletion and are unaware of it. I
: really wonder what the true
: prevelance of the deletion is. I
: bet it is a lot higher than we
: currently think. As the public
: becomes more aware of the deletion,
: hopefully more people will begin to
: research their own personal issues
: and discover the real reason for
: their difficulties.
:
: I will continue to check this Board
: and keep my eyes open for others. I
: hope everything with your son works
: out.
: Thanks,
: mjthomps@hotmail.com
:
: --Previous Message--
: Hi Mark,
: I check the board nearly every day -
: (I have for more than a year now),
: and I've seen the number of posts
: come and go. It has been a bit
: quiet lately, but I don't know what
: that means (?)
: I know personally I just haven't had
: recent issues. Although I'm sure I
: will again - my 7-yr old with 22q is
: being evaluated for special ed
: services in math and hopefully will
: begin receiving them soon.
:
: I also want to try to get info on an
: international conferance on VCFS
: which may be coming to my state this
: summer.
: -that's a separate thread.
:
: I'm sorry about the loss of your
: daughter. I can understand why you
: and you wife have such a strong
: interest in this disorder. I think
: there is still soooo much we have to
: learn about VCFS.
: It's so frustrating when you hear
: that there is still a population of
: children and adults who have the
: deletion and don't know it. Tinking
: about the difficulties they run
: into- and without understanding the
: root cause - it must be very hard.
:
: If your interest renews a
: communication on this board, that
: would be great. Otherwise, if you
: find a board with more input, please
: let me know and I'll monitor/post on
: that one as well.
:
: Thanks
: Amy
:
: --Previous Message--
: Does anyone still use this message
: board? Is there another one that
: more people use to gain information.
: It seems like no one ever posts
: here anymore. If anyone knows of
: another board, please let me know.
: Thanks, mjthomps@hotmail.com
:
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