[ Post a Response | 22q Deletion Interest Board ]
Posted by Mark on 3/23/2006, 6:36 pm, in reply to "Re: Anyone out there?" --Previous Message--
68.32.202.207
Hopefully things will continue to go well for you and your fmaily. I enjoyed your daughter's website.
Thanks, mjthomps@hotmail.com
: I also check this board if not every
: day, certainly every week.
:
: 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.
: Mother to Samantha 5 years old with
: VCFS/22QDeletion/DiGeorges Syndrome.
:
: http://www.caringbridge.org/visit/samvcfsstory
:
: --Previous Message--
: 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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