Guestbook archives : 1997 | 1998 | 1999 (1) | 1999 (2) | 2000
Saturday, March 15 - 1997 at 15:28:42
Name: Margarette Christie
Email Address: maggiecdc@bigfoot.com
How did you find this page?: Word of mouth
Feedback: Hello to all family and friends
of those with cri du chat syndrome.
_____________________________________________________________
Tuesday, March 18 - 1997 at 17:17:04
Name: richard renshaw
Email Address:
How did you find this page?: From a link
on another page
Feedback: Congratulations on what looks like
a wide ranging and useful web-page about Cri-du-Chat. I'm creating a web-site
for the Wessex Regional Genetics Lab, which is involved in the diagnosis
of this & other chromosomal syndromes and I hope this page may be of
help when we make this diagnosis.
_____________________________________________________________
Friday, March 21 - 1997 at 01:48:13
Name: Alok Srivastava
Email Address: Alok.Srivastava@TRW.Com
How did you find this page?: A search engine
Feedback:
_____________________________________________________________
Monday, March 24 - 1997 at 18:19:49
Name: Susan Root
Email Address: skr@ncgr.org
How did you find this page?: From a link
on another page
Feedback: I found your page through Family
Village. I think it's well done--congratulations! I'm putting together
a series of informational pieces for health care professionals as well
as family members about various genetic conditions. I noticed your comments
about how much you disliked the informational pieces from other groups;
I'm trying to figure out how I can convey the information needed by health
care providers without unnecessarily offending parents. Any comments you
could provide me would be welcome!
_____________________________________________________________
Tuesday, March 25 - 1997 at 15:28:59
Name: nibrandf
Email Address:
How did you find this page?: A search engine
Feedback: it was very helpful
_____________________________________________________________
Wednesday, March 26 - 1997 at 04:52:21
Name: pareynol@up.net
Email Address: Paul
Reynolds
How did you find this page?: A search engine
Feedback: Enjoyed the information available
on your page, I'm bookmarking it for future reference..I have a son with
Cri du Chat, he just turned eighteen and have been looking for new info
constantly for over eighteen years, your info should help. Thank you.
_____________________________________________________________
Thursday, March 27 - 1997 at 00:52:40
Name:
Email Address:
How did you find this page?: Just strolled
on by
Feedback: i think this web-page was very
imformative, it gave me alot of answers to questions i could not find elsewhere..
_____________________________________________________________
Thursday, March 27 - 1997 at 08:18:36
Name: Matthew D. Lee, WB6BWZ
Email Address: MattLee@iName.com
How did you find this page?: A search engine
Feedback: Still the best CDC source and support
group on the WWW. Keep up the good work, Jeff. You are doing REAL GOOD!
:)
_____________________________________________________________
Monday, March 31 - 1997 at 06:48:25
Name: Joyce Pollard
Email Address: tpollard@iaccess.com.au
How did you find this page?: A search engine
Feedback: We have a 4yr. old boy with Cri
Du Chat, we are constantly using this site and have found some interesting
bits. We plan on sending you a photo of him very soon to add to the gallery.
Keep up the good work
_____________________________________________________________
Monday, March 31 - 1997 at 17:51:03
Name: Bob & Brenda Reed
Email Address: vrreed@futura.net
How did you find this page?: A search engine
Feedback: We have a son(Robbie) age 17 with
Cri-Du-Chat and really find this page helpful. We have not met any other
families with a child like ours, and this support group is great. Thanks!
Any email is welcome.
_____________________________________________________________
Monday, March 31 - 1997 at 18:52:27
Name: marion douglas
Email Address: douglasm@cadvision.com
How did you find this page?: Just strolled
on by
Feedback: hello, i am a school psychologist
looking for information on effectiveness of stimulant medication on kids
with cri du chat syndrome. specifically, i am working with a boy who is
very active, one could say hyperactive, works much better one on one than
in a group etc. i have not read anything about ritali or dexedrine use
with children with cri du chat. i tend to think this boy might benefit
but can't find any supporting literature. don't suppose you know of any?
thanks.
_____________________________________________________________
Tuesday, April 01 - 1997 at 06:25:37
Name: Patty Comperini
Email Address: music@dataex.com
How did you find this page?: A search engine
Feedback: Hi! I am a residential case manager
at a group home for developmentally disabled adults. We have two females
with C.D.C. ages 25 & 33. I am interested in finding info. or hearing
about other adults with C.D.C. To see if there are any similar characteristics
in adulthood. The 25yr.old has extremely sensitive hearing,poor impulse
control, trouble making choices,and does become physically aggressive by
striking out,kicking, or pinching. She also can become self-abusive i.e.
hitting self on the forehead. After yrs. of behavior approaches we have
made progress decreas- ing these behaviors by limiting # of choices given
supporting choices, remaining consistent and with work with a psychiatrist
found Stelazine to greatly improve her over all mood! Her conversation
level has also increased. She is verbal but can be hard to understand at
times.She does know some sign and can play a good game of charade to get
her self understood. The 33yr. old has had heart surgery as an infant.
(problem w/ a valve) She also had curvature of the spine so bad that she
was crushing her organs so had back surgery in her teens to fit her with
a rod. However still is not perfectly straight,but functioning well! She
has chronic constipation. She has a B.M. once or twice a week. This too
is a great improvement before starting the use of Lactalose syrup she had
a B.M. every 30-45 days! She is non-verbal,knows about 100 signs and gestures
She also has been recently evaluated as a user of faucilitated communication.We
also were surprised to learn her intelligence is greater than believed.
She can identify words when presented with flashcards. Her depth perception
is very poor, poor chewing/ eating habits,poor eye/hand coordination,drooling
present,abnormal gait and tires& frustrates easily. Frustration can
lead to hitting self in the head, angry vocal noises,and occasional striking
out at others(peers). Both ladies work fulltime in a supported environ-
ment. Both enjoy music,seek lots of 1:1 attention, exhibit good senses
of humor,and dislike fresh friut and vegtables. This letter got longer
than I originally intend- ed.I do hope to find other adults with C.D.C.
to share observations with and support their parents by providing them
with further knowledge. Anyone I can help may also write I'll do my best.
Sincerly, Patty
_____________________________________________________________
Tuesday, April 01 - 1997 at 17:50:48
Name: Amy Cameron
Email Address:
How did you find this page?: A search engine
Feedback: Looks great. I was trying to find
more information on Makaton and the 'Wonderful Foster Parents' popped up.
I certainly do learn something new everyday. I had never heard of Cri Du
Chat.
_____________________________________________________________
Thursday, April 03 - 1997 at 13:44:02
Name: bbwolf@pc.jaring.my
Email Address:
How did you find this page?: Just strolled
on by
Feedback: great job! keep it up!
_____________________________________________________________
Thursday, April 03 - 1997 at 13:59:13
Name: Palmina
Email Address: claude.gordon@tr.cgocable.ca
How did you find this page?: From a link
on another page
Feedback: I've learned so much about this
syndrome, keep up the good work.If possible I'd like more information on
speech,and the lattest research on gene therapy that's being done.I've
read about it on Noah's birth defect page.I found it very promissing.Who
knows maybe one day our children will be disabled free.
_____________________________________________________________
Friday, April 04 - 1997 at 01:53:48
Name: Cheryl Cleary
Email Address: U_2cleary@venus.twu.edu
How did you find this page?: A search engine
Feedback: I am and occupational therapy student
in the U.S. and I think sites like this are a wonderful resource for families/caregivers
of special needs kids.
_____________________________________________________________
Saturday, April 05 - 1997 at 05:53:06
Name: Heather Robison
Email Address: madisonr.netdoor.com
How did you find this page?: Word of mouth
Feedback: We have a 19 month daughter with
Cri-du-chat. I first heard about this site at the convention in Houston,
but this is my first time on it. It's great! Very beneficial.
_____________________________________________________________
Sunday, April 06 - 1997 at 03:51:27
Name: CATHERINE MORGAN
Email Address: MORGEMPER@AOL.COM
How did you find this page?: A search engine
Feedback: I have a 20-month old grandson
who has been diagnosed with Cri-du-chat. I am eager to find out information,
especially from parents who have experiences to relate. We really do not
know too much yet. My grandson's name is Afton, and he is a sweetheart.
He's just starting to pull up and stand holding onto something. He only
says da-da and bomma (momma) so far.
_____________________________________________________________
Sunday, April 06 - 1997 at 14:26:42
Name: Chanida Suwanjinda
Email Address: alfred@pg.net
How did you find this page?: A search engine
Feedback: Very very useful.
_____________________________________________________________
Sunday, April 06 - 1997 at 17:39:22
Name: bbrown
Email Address:
How did you find this page?: From a link
on another page
Feedback: informative
_____________________________________________________________
Tuesday, April 08 - 1997 at 04:59:04
Name: Mary Cutaiar
Email Address:
How did you find this page?: A search engine
Feedback: A great page! A wealth of information.
Thanks
_____________________________________________________________
Wednesday, April 09 - 1997 at 19:54:30
Name: pat lunsford
Email Address: plunsfor@alb.asctmd.com
How did you find this page?: A search engine
Feedback: this is the first time that I have
been to your site but defentely not the last. I have a daugther who is
three and one half who has cri-du-chat and I am always looking for more
info about the syndrome and for people hwo have cri-du-chat children. PLEASE
EXCUSE MY SPELLING AND GRAMMOR
_____________________________________________________________
Wednesday, April 09 - 1997 at 23:41:10
Name: Karen Overbey
Email Address:
How did you find this page?: A search engine
Feedback: I am just learning to use the internet,
and was very excited to find a web page dedicated to Cri Du Chat. My daughter
is 19 months old with CDC. I plan to use this page often!
_____________________________________________________________
Friday, April 11 - 1997 at 01:43:31
Name: Lindsay Robinson
Email Address:
How did you find this page?: A search engine
Feedback: Thanks! Great page. Helped me a
lot. Keep up the good work.
_____________________________________________________________
Friday, April 11 - 1997 at 06:23:00
Name: cindy matwyko
Email Address: stephani@mars.ark.com
How did you find this page?: From a link
on another page
Feedback: I have a 3 year old daughter, Montana,
with CDC and I'm really looking forward to talking to other parents!
_____________________________________________________________
Friday, April 11 - 1997 at 07:50:25
Name: pegasus.fir
Email Address:
How did you find this page?: A search engine
Feedback: We have a four month old grandson
just diagnosed with Cri Du Chat syndrome. We know nothing about it and
are eager to learn all we can about it. Any information that can be sent
our way would be greatly appreciated.
_____________________________________________________________
Monday, April 14 - 1997 at 19:55:04
Name: Dale Yeager
Email Address: dyeager@hcpd.com
How did you find this page?: From the U-NET
page index
Feedback: a freind of mine is looking for
information on cri-du-chat. Most of the pages i have found are a little
above me. Can you let me know where a good page for the common people can
get some good information??
_____________________________________________________________
Tuesday, April 15 - 1997 at 02:55:09
Name: Lucy Brady
Email Address: lukia
How did you find this page?: Just strolled
on by
Feedback: Keep up the good work!
_____________________________________________________________
Tuesday, April 15 - 1997 at 15:02:05
Name: Ann Waldrop
Email Address: EWald3468@aol.com
How did you find this page?: Word of mouth
Feedback: I would love to see the U.S. chapter,
the 5p- Society, put some information up on this page! I will try to arrange
to send a picture of my daughter. It seemed to me that most of kids pictures
appeared to be those of kids with less pronounced facial features. I think
we should be careful to provide a balanced view, especially for families
with kids who are newly-diagnosed. I was really excited when I found out
about this page, and hopefully I can talk to some of the other members
of the U.S. group about setting up a page. Thanks for all your work in
putting this together. We all know how difficult it is to find good information
on this syndrome. Ann Waldrop
_____________________________________________________________
Tuesday, April 15 - 1997 at 18:27:28
Name: Stewart Wilson
Email Address:
How did you find this page?: A search engine
Feedback: Hi Jeff This is great - but Where's
the conference? Stewart
_____________________________________________________________
Wednesday, April 16 - 1997 at 15:37:39
Name: Margarette Christie
Email Address: maggiecdc@bigfoot.com
How did you find this page?: A search engine
Feedback: I'm the National Co-ordinator for
the Cri Du Chat Support Group of Australia. I want to congratulate Jeff
on the great web site and especially on the guestbook. It provides a wonderful
forum for us to share information and experiences. I have already found
someone with experience of a particular medication which I needed to know
about for my daughter Mindy. I am happy to communicate via e-mail with
any family or friends of those with Cri Du Chat syndrome to share information
and the experiences of our 50+ Australian and New Zealand families. Thank
you Jeff.
_____________________________________________________________
Wednesday, April 16 - 1997 at 17:46:47
Name: Zebulon Library
Email Address: NCS0557@INTERPATH.NET
How did you find this page?: A search engine
Feedback: lOOKING FOR INFO FOR A PATRON WHOSE
CHILD HAS "CRI DU CHAT'. THANKS FOR A HELPFUL SITE.
_____________________________________________________________
Thursday, April 17 - 1997 at 19:39:11
Name: Gabe Galster
Email Address: khorn@aol.com
How did you find this page?: A search engine
Feedback: I am doing a genetic research project
on cdc syndrome Your site seems to be organized well but I cant access
any of your photos or articles fron youtr home page. Keep up the good work!
_____________________________________________________________
Saturday, April 19 - 1997 at 03:01:33
Name: Katherine Jackson
_____________________________________________________________
Wednesday, April 23 - 1997 at 00:54:30
Name: Linda Breed
_____________________________________________________________
Friday, April 25 - 1997 at 20:08:28
Name: Jennifer Kimball
_____________________________________________________________
Saturday, April 26 - 1997 at 18:54:40
Name: Lynne Cartwright
_____________________________________________________________
Sunday, April 27 - 1997 at 10:05:15
Name: Bruce Jefferies
_____________________________________________________________
Monday, April 28 - 1997 at 01:23:42
Name: Kelly Shropshire
_____________________________________________________________
Wednesday, April 30 - 1997 at 03:33:14
Name: taramayes@aol.com
_____________________________________________________________
Friday, May 02 - 1997 at 00:06:05
Name: Maddalena Illario
_____________________________________________________________
Friday, May 09 - 1997 at 05:10:41
Name: slilio@stll.uswest.net
_____________________________________________________________
Friday, May 09 - 1997 at 19:40:22
Name: mccallum@novagate.com
_____________________________________________________________
Friday, May 16 - 1997 at 21:27:48
Name: Mary Varilek
_____________________________________________________________
Wednesday, May 21 - 1997 at 11:31:42
Name: Judy Phipps
_____________________________________________________________
Friday, May 23 - 1997 at 09:13:41
Name: Joyce Pollard
_____________________________________________________________
Saturday, May 24 - 1997 at 05:47:02
Name: Margaret
Tuesday, May 27 - 1997 at 13:01:26
Name: Janet
_____________________________________________________________
Thursday, May 29 - 1997 at 05:41:47
Name:
_____________________________________________________________
Saturday, May 31 - 1997 at 19:54:40
Name: JANET.BUBBLES
_____________________________________________________________
Monday, June 02 - 1997 at 11:47:26
Name: stuart and Vicki
_____________________________________________________________
Thursday, June 05 - 1997 at 09:43:09
Name: Tony Phillips
_____________________________________________________________
Sunday, June 08 - 1997 at 05:14:40
Name: dherron@noblecan.org
_____________________________________________________________
Tuesday, June 10 - 1997 at 03:05:50
Name: Jennifer Schneider
_____________________________________________________________
Thursday, June 12 - 1997 at 04:21:16
Name: Suzanne Zimmerman
_____________________________________________________________
Friday, June 20 - 1997 at 05:08:23
Name: Rebecca Dare
_____________________________________________________________
Saturday, June 21 - 1997 at 10:46:10
Name: Adilson Henrique
_____________________________________________________________
Tuesday, June 24 - 1997 at 04:08:11
Name: RobertDenn@aol.con
_____________________________________________________________
Wednesday, June 25 - 1997 at 02:12:04
Name: Ann Clapp
_____________________________________________________________
Friday, June 27 - 1997 at 08:01:43
Name: H.R. Schulte
_____________________________________________________________
Tuesday, July 01 - 1997 at 10:12:01
Name: Heather Symons
_____________________________________________________________
Friday, July 04 - 1997 at 06:44:45
Name: lapolson@InfoAve.Net
_____________________________________________________________
Tuesday, July 08 - 1997 at 04:02:48
Name: Leona Owens
_____________________________________________________________
Tuesday, July 08 - 1997 at 15:55:40
Name: Simon Cope
_____________________________________________________________
Wednesday, July 09 - 1997 at 23:17:18
Name: Jenni Reilly
_____________________________________________________________
Thursday, July 10 - 1997 at 16:09:35
Name: Becki Watt
_____________________________________________________________
Sunday, July 20 - 1997 at 02:25:05
Name: Jennifer Teo
_____________________________________________________________
Tuesday, July 22 - 1997 at 21:51:35
Name: Walter & Wendy Donaldson
_____________________________________________________________
Saturday, July 26 - 1997 at 00:31:29
Name: John Beall
_____________________________________________________________
Saturday, July 26 - 1997 at 05:24:27
Name: Regan Marshall
_____________________________________________________________
Sunday, July 27 - 1997 at 15:47:20
Name: osprey@wilmington.net
_____________________________________________________________
Friday, August 01 - 1997 at 22:55:44
Name: Charles Middleton
_____________________________________________________________
Thursday, August 07 - 1997 at 05:05:58
Name: joan
_____________________________________________________________
Friday, August 08 - 1997 at 01:55:44
Name: Miranda Humphreys
_____________________________________________________________
Friday, August 08 - 1997 at 07:54:04
Name: Rod Etheridge
_____________________________________________________________
Sunday, August 10 - 1997 at 18:20:54
Name: Lesley Mayne
_____________________________________________________________
Tuesday, August 12 - 1997 at 12:05:48
Name: Jan Möller
_____________________________________________________________
Thursday, August 14 - 1997 at 02:16:23
Name: Mary Kay Hennig
_____________________________________________________________
Sunday, August 17 - 1997 at 02:52:23
Name: Charlene Rokosh
_____________________________________________________________
Monday, August 18 - 1997 at 15:19:29
Name: Margarette Christie.
_____________________________________________________________
Tuesday, August 19 - 1997 at 19:57:20
Name: Jeffrey Quilter
_____________________________________________________________
Wednesday, August 20 - 1997 at 06:39:18
Name: Casey M. Evans
_____________________________________________________________
Thursday, August 28 - 1997 at 02:59:05
Name: LaVonne Polson
_____________________________________________________________
Friday, August 29 - 1997 at 15:35:56
Name: Joyce
_____________________________________________________________
Sunday, August 31 - 1997 at 00:42:31
Name: Val Linehan
_____________________________________________________________
Monday, September 01 - 1997 at 00:21:59
Name: Jennifer Hayes
_____________________________________________________________
Tuesday, September 02 - 1997 at 22:56:19
Name: Martin Boorstein
_____________________________________________________________
Wednesday, September 03 - 1997 at 00:17:32
Name: Birgitta Adeltoft
_____________________________________________________________
Wednesday, September 03 - 1997 at 15:16:13
Name: susiegreen@hotmail.com
_____________________________________________________________
Wednesday, September 10 - 1997 at 16:47:39
Name: John Perkins
_____________________________________________________________
Friday, September 12 - 1997 at 01:11:07
Name: Jennifer
_____________________________________________________________
Tuesday, September 16 - 1997 at 21:45:10
Name: Jeff Willits
_____________________________________________________________
Wednesday, September 17 - 1997 at 01:01:41
Name: Beth
_____________________________________________________________
Friday, September 19 - 1997 at 20:29:29
Name: Lynette Greer
_____________________________________________________________
Thursday, September 25 - 1997 at 21:55:29
Name: Genn Rollins
_____________________________________________________________
Friday, September 26 - 1997 at 05:02:36
Name: Karolyn Peery
_____________________________________________________________
Monday, September 29 - 1997 at 01:31:34
Name: Zelma Hassmann
_____________________________________________________________
Thursday, October 02 - 1997 at 22:26:54
Name: John Noble
_____________________________________________________________
Monday, October 06 - 1997 at 03:29:23
Name: lpmanfre@petronet.net
_____________________________________________________________
Wednesday, October 08 - 1997 at 06:20:35
Name: Diane
_____________________________________________________________
Thursday, October 09 - 1997 at 07:20:57
Name: Linda J. Heinbaugh
_____________________________________________________________
Tuesday, October 14 - 1997 at 23:53:24
Name: Penny Hatch
_____________________________________________________________
Thursday, October 23 - 1997 at 03:55:03
Name: Cynthia Lewis
_____________________________________________________________
Friday, October 31 - 1997 at 07:04:23
Name: Susan Morrow
_____________________________________________________________
Tuesday, November 04 - 1997 at 04:38:55
Name: Joe Howell
_____________________________________________________________
Friday, November 07 - 1997 at 21:15:22
Name: SHERRY_MILLIGAN@crcsb.ed.on.ca
_____________________________________________________________
Tuesday, November 11 - 1997 at 21:07:09
Name: Daniel O'Brien
_____________________________________________________________
Thursday, November 13 - 1997 at 09:39:33
Name: barr meizel
_____________________________________________________________
Tuesday, November 18 - 1997 at 03:26:37
Name: Carita Lee
_____________________________________________________________
Tuesday, November 18 - 1997 at 22:36:33
Name: C. Warden Hall
_____________________________________________________________
Wednesday, November 19 - 1997 at 13:38:50
Name: Margarette Christie
_____________________________________________________________
Thursday, November 20 - 1997 at 06:58:18
Name: BEherman@Juno.com
_____________________________________________________________
Thursday, November 20 - 1997 at 20:22:58
Name: Marla Trentham
_____________________________________________________________
Sunday, November 23 - 1997 at 16:58:45
Name: Robin Ricks
_____________________________________________________________
Monday, November 24 - 1997 at 22:40:00
Name: Janne
_____________________________________________________________
Tuesday, December 02 - 1997 at 15:41:52
Name: christy and alex stevenson
_____________________________________________________________
Monday, December 15 - 1997 at 04:01:01
Name: Kira Kapp
_____________________________________________________________
Tuesday, December 16 - 1997 at 00:30:53
Name: Adam & Elaine Precious
_____________________________________________________________
Tuesday, December 16 - 1997 at 17:21:24
Name: Louise
_____________________________________________________________
Wednesday, December 17 - 1997 at 17:51:56
Name: CHUCK
_____________________________________________________________
Saturday, December 27 - 1997 at 02:36:59
Name: madonna sullivan
_____________________________________________________________
Tuesday, December 30 - 1997 at 07:13:21
Name: Jolene Towers
_____________________________________________________________
Email Address: >
How did you find this page?: A search engine
Feedback: I found this page quite helpful.
I have been working with a 10 year old girl with cri du chat. We work wonderfully
well together and have a great "relationship." In the two years I have
been working with her she has learned 10 verbal imitations and 12 sign
language. Please feel free if you have any other great information please
send it! Working in Toronto doesn't have all the privelages!! THANKS AGAIN!!
Email Address:
How did you find this page?: Just strolled
on by
Feedback: Very interesting! I am an early
intervention specialist and was looking for information on cri du chat
syndrome. Best wishes.
Email Address:
How did you find this page?: A search engine
Feedback: thank you!!!!!!! I've been looking
for info on Cri-du-Chat for about 2 hours. finally there's something worth
reading. Yeah!
Email Address: LCart14@aol.com
How did you find this page?: A search engine
Feedback: My daughter is 14 and has Cri-du
chat. I'm a member of the 5P- Society in America but have found that the
severity of the syndrome varies dramatically. Haven't found anyone who's
child has same or similar issues (i.e. my daughter doesn't have seizures
but is still in diapers and has no speech). I will be back to visit...
Email Address: brucej@ozemail.com.au
How did you find this page?: Just strolled
on by
Feedback: Hi, Jeff, Still just looking for
more conference details.. Monique is very excited of the idea of travelling
in a plane. We are going to take her for a few 'acclimatisation' trips
to the local airport. Best regards.
Email Address: kilgore@sccoast.net
How did you find this page?: A search engine
Feedback: I'm researching genetic diseases
for my freshman biology class, and you wouldn't believe how much help your
site was! It looks wonderful, and I found the links very convenient. Keep
up the good work!
Email Address: Tara
Mayes mother of Sara
How did you find this page?: A search engine
Feedback: This is Tara (mother of Sara Mayes.
I did not realize we had our own website yet. Had searched on 5p- and cri-du-chat
some time ago. Was surprised to see this page. Have designed some pages
on a local server. Glad to see us represented.
Email Address: illar001@mc.duke.edu
How did you find this page?: Just strolled
on by
Feedback:
Email Address:
How did you find this page?: A search engine
Feedback: I have a nine-year old daughter
named Alexandra. I just got on the net and don't understand too much how
it works but I would like to communicate with other parents with a child
with Cri-Du-Chat. I enjoyed the information that I received. We are a military
family and we have run across other families with a Cri-Du-Chat child but
they have always been very young.
Email Address: dtck@hotmail.com
How did you find this page?: A search engine
Feedback: My 12 year old son has been diagnosed
with having mild tourettes syndrom...the doctor is treating him with Clonodine...I
would like to find out what the drug is and how it works and any possible
side effects it might have...thank you...Sal McCallum
Email Address: mvarilek
How did you find this page?: A search engine
Feedback: My daugter, Brittney, is 7-years
old and has Cri-du-chat syndrome. She was diagnosed at four months old.
She is a bright and energetic little girl who seems to understand so much.
We have been led to believe, from early studies, not to expect much from
her as far as learning. We are finding that to be totally untrue and would
like to encourage others to have hope. Every child is different. I would
like to talk to parents of a child with c-d-c of the same age.
Email Address: dphipps@auracom.com
How did you find this page?: Word of mouth
Feedback: Hello there. I would like to link
up with other people/parents on this page. My e-mail is above. I am looking
for information on some Margaret Collins articles. She is out of Ireland
and the information has to do with the effects of diet on crit du chat
kids and the metabollic differences found in c-d-c children. Also, does
anyone know if she has a website, mailing address, phone number, etc. I
could use any help I can get. It is great knowing this page is there! Judy
Email Address: tpollard@iaccess.com.au.
How did you find this page?: Just strolled
on by
Feedback: Hi. Like Judy Phipps I'm also trying
to find information regarding Margaret Collins an address, e-mail or even
phone number would be greatly appreciated. Hope someone out there can help
us.
Email Address: jdms@erols.com
How did you find this page?: Just strolled
on by
Feedback: I have a three year old daughter
with cri du chat syndrome and any information is always helpful. Thanks!
_____________________________________________________________
Email Address: janet@bubbles.u-net.com
How did you find this page?: Word of mouth
Feedback: Jeff is fabulous
Email Address: ustwo41
How did you find this page?: From a link
on another page
Feedback: My newborn niece was just diagnosed
with CDC, and I was looking for some information on it. I found site thru
OIMM - too technical for me! Would like more info - can't seem to link
to sites in list!!??
Email Address:
How did you find this page?: Just strolled
on by
Feedback: very informative, well structured,
and Charlotte is beautiful.
Email Address: stuvic@ozemail.com.au
How did you find this page?: A search engine
Feedback: We have a seven year old son with
CDS. It is pleasing to see so much information about CDS. If anyone has
any information regarding Growth Hormones and CDS please let us know.
Email Address: nil
- from Australia
How did you find this page?: A search engine
Feedback: Great to see a page like this I
would be interested in any information on any special health problems older
people with CDC may face.
Email Address: Deb
Herron
How did you find this page?: A search engine
Feedback: My 25 year old daughter Sarah was
identified with CDC shortly after birth. Sarah has a heart condition which
progressed to quickly for any surgical remedy. She graduated from high
school through a class for MMH students. She remains at home with me and
her 15 year old brother and is the aunt to her 22 year old sisters two
children. She is extremely proud to be their aunt! Sarah works at a sheltered
workshop in our community. I would be glad to share any information that
I have gained raising Sarah or just offer any support that I can for new
parents.
Email Address:
How did you find this page?: From a link
on another page
Feedback: I am a teacher of the Deaf getting
my M.A. in Special Education. I am looking for info on the use of sign
language with non-verbal children who have normal hearing. Any leads for
me, pls. let me know! schneider@combase.com THANKS!
Email Address: Not
yet!
How did you find this page?: Just strolled
on by
Feedback: Our daughter has a deletion in
6q, we look for any information we can get!
Email Address:
How did you find this page?: Just strolled
on by
Feedback: I'd like to add some items to your
help page. I am a teacher in Bunbury, Western Australia, and have two girls
with Cri-de-chat that I deal with. One has a problem with constant dribbling.
She is 14 years old, and has profound physical and intelectual disabilities
(non-ambulant, no communication) Any help/advise will be much appreciated
The other girl is 5 years old and attempting to talk We are teaching sign
language and using Pictorial symbols but I am interested to what extent
her verbal skills may develop. She appears to have only a mild level of
intelectual disability. Should we be considering an electronic communication
devise? Any advice, once again, will be appreciated. Please put "ATTN Rebecca"
in the subject box when writing to me. Thankyou in advance, Rebecca Dare.
Email Address: a.henrique@originet.com.br
How did you find this page?: A search engine
Feedback: We have a 6 year old boy with cri
du chat sindrome named Bruno Eduardo. We loved this site. We live in Sao
Paulo - Brazil. Who want contact-us please e-mail us. Congratulations thanks
Email Address:
How did you find this page?: A search engine
Feedback: We are parents of a 27 year old
cri de chat adult. Bobby lives at home with us.
Email Address: annfromoz@hotmail.com
How did you find this page?: From Special
Kids WebRing
Feedback: Hi Jeff , I have finally got back
to you, I have this net thing under control now..... I actually think im
addicted.. Margaret Christie rang me the other night and we got on so well,
Kindred Spirits... I will be in London about the time of the conference
and am very keen to be involved so if you can get in touch with me please
do. Ann
Email Address: hans-reiner.schulte@metronet.de
How did you find this page?: From a link
on another page
Feedback: I am myself father of a 3.5 year
old girl with CDC. I found your page as link on the web-page of the American
group. I like your web page. In particular the gallery is a good idea.
Also impressing the list of speakers at your annual meeting. By the way
there is also a German CDC support group with a meeting at just the same
weekend.
Email Address: Heather.Symons@BTINTERNET.Com
How did you find this page?: Just strolled
on by
Feedback: It makes a change to read so many
positive things from people who are living with Cri-du-Chat rather than
the text-book doom and gloom. Keep up the good work!
Email Address:
How did you find this page?: A search engine
Feedback: I have a ten year old daughter
with Cri du Chat. She's really come a long way over the past few years.
She has beat a lot of the odds. The doctors are all amazed with her. We
could not have coped without God.
Email Address: LeHuggins@infoave.net
How did you find this page?: Just strolled
on by
Feedback: I have a neice who has Cri-du-Chat.She
is 10 years old.She is a loving and sweet little girl.She has every chance
in the world of growing up to be a normal and healthy child.She has loving
parents and a 18 year old brother who have took good care of her and loved
her with all there hearts.We all love her to.
Email Address: ncvo@compuserve.com
How did you find this page?: From
a link on another page
Feedback: What a great site! This is what
the internet should be all about - empowering and networking small groups
of people and helping them reach a worldwide audience - keep up the good
work!
Email Address: jnj1@earthlink.net
How did you find this page?: A search engine
Feedback: My husband and I have a 34 month
old son with CDC syndrome. We are very grateful to you for taking the time
and effort to put this wonderful and informative website togeter. Our son
is currently walking with support, and has several verbalizations and many
signs that he uses to communicate with us. He is very active, loving and
a lot of fun. We find very structured, behavioral interventions to be very
effective for teaching him new skills and modifying his behavior. We have
had some problems with aggressive behavior, such as hitting, biting, and
pinching, but have seen a significant decrease by using behavioral strategies
and teaching him more appropriate ways to communicate with us. We appreciate
the website that you have put together very much! I love the gallery and
I would love to send a picture of our son to you. I will try and figure
out how? Anyone who would like to contact us, we would love to hear from
you.
Email Address: xtinquish@aol.com
How did you find this page?: From the U-NET
page index
Feedback: Great page enjoyed we have 31 month
old son would love to talk to outhers
Email Address: JDTEO@aol.com
How did you find this page?: A search engine
Feedback: I'm really glad to find out that
there's a homepage on this cri du chat syndrome. I'll like to get more
information on it as my nephew is suffering from this syndrome. Thank you.
Email Address: walter@mweb.co.za
How did you find this page?: From a link
on another page
Feedback: We have a son, Jason who is almost
four years old. He has also beaten all the odds. He was born with the chord
wrapped around his neck 5 times. Diagnosed with menengitis at four weeks
and then diagnosed with CDC when he got out of hospital six weeks later.
We were told to expect the worst. No walking, no talking, a 'vegetable'
in the making! Not a chance, this kid is walking, comunicating, saying
a few words and progressing reasonably well. It's a long story in a short
time. The page is great! Keep it and the support up!!
Email Address: Jbeall5453@aol.com
How did you find this page?: A search engine
Feedback: We have a 8yr old girl named Brooke
that was diagnosed with CDC while still in the hospital at birth. Our first
reaction was just like all of the other parents,"What are we going to do?"
But thru early intervention and seeking the help of all the professionals
available and treating Brooke like a "normal" child we are extremely proud
to say that she overcame all of our early concerns. Brooke is enrolled
in a public school,that includes a half day of mainstreaming. She has taken
dance class for 5yrs., swim lessons and is begging to play soccer in the
fall. She speaks well enough to be understood about 50% of the time,can
write her name, knows her numbers and can even play on the PC. I enjoy
bragging about Brooke because I believe it gives parents hope. Feel free
to e-mail me.
Email Address: rmarshal@dillpo.dillon.com
How did you find this page?: From a link
on another page
Feedback: My wife and I have an eleven year
old daughter with Cri-du-chat. We were just checking out all the information
now available on the net. We are members of the 5p- Society and attend
the conferences each summer. We are looking forward to seeing everyone
in Cincinnati in a few weeks. The web site is wonderful. Keep up the good
work. We all appreciate it.
Email Address:
How did you find this page?: From a link
on another page
Feedback: I am not familiar with Cri Du Chat
Syndrome. I did read what information you have posted. I'm sure this site
will be greatly appreciated by parents and friends of children living with
this syndrome! It always helps to know you're not alone when dealing with
special health issues on a day to day basis.. Charlotte is a precious child.
I frequent the Kids with Diabetes site at Melissa's, and saw where she
had posted this link, I decided to ck it out and am glad that I did! I
wish you all well.
Email Address: 4caster@one.net
How did you find this page?: A search engine
Feedback: I have a six year old son with
cri du chat. Really enjoy your site, keep up the good work.
Email Address: my88f150@aol.com
How did you find this page?: From a link
on another page
Feedback: This is like a dream come true.
I have felt so alone for so many years. This is great... Thanks.
Email Address: littlehump@lorettotel.net
How did you find this page?: A search engine
Feedback: Thanks for being here. I am a direct
care staff person in a adult day center . One of my clients has C.D.C.
He is in his thirties. He is non verbal. and we are looking for ways to
communicate with him. I would be very interested in talking to anyone with
suggestions in sign language. We have been told he is unable to learn any
signs. This can't be true, because if you wipe your mouth he knows to use
his hankerchief to wipe his.
Email Address: etheridge@polarcom.com
How did you find this page?: A search engine
Feedback: Good information
Email Address:
How did you find this page?: A search engine
Feedback: I'm from Johannesburg South Africa
, I am the mother of Nicholas, a 17-yr old son with cri-du-chat syndrome.
Delighted to find some information on the internet regarding cri-du-chat.
Will be in touch again . Thank-you and good luck.
Email Address: jan.moller@sos.se
How did you find this page?: From a link
on another page
Feedback: Incredible good site! I have been
exploring it for a while - now and then. Done my first "chat" on the net
here for example. My son have CDC and is 3 years old. In sweden we are
about 25 families in a supportgroup. Jeff, you are doing a very good and
important work!
Email Address: Hecate825@aol.com
How did you find this page?: From a link
on another page
Feedback: I am a developmental disabilities
care professional who is looking for information on CDC for one of my residents.
We are unsure what the best options are for her.
Email Address:
How did you find this page?: From a link
on another page
Feedback: I was very pleased to find info
on cri du chat on the web. Thank you for your gift of time and I am sure
the many hours you put into this program won't leave you unrewarded. Thanks
again Charlene Rokosh
Email Address: maggiecdc@bigfoot.com
How did you find this page?: Just strolled
on by
Feedback: Dear Lesley of South Africa, I
have a contact in South Africa who is in touch with some other families
who have children with CDC. If you are interested please contact me. Margarette
Christie.
Email Address: QuilterJ@DOaks.org
How did you find this page?: Word of mouth
Feedback: Cheers from Jeffrey Q.
Email Address: CM_Evans@pacbell.net
How did you find this page?: A search engine
Feedback: Jeff, I feel a little silly signing
the guest book, after all we visit your site 2 or 3 times a week to see
our favorite picture (Montel) and to check for any new additions. But I
thought you should know that we really think you are doing an EXCELLENT
job with this site. I often use this as a referral for family and friends
that want to know more about Cri du Chat. Thank you.
Email Address: lapolson@infoave.net
How did you find this page?: Just strolled
on by
Feedback: Just checking by to see who's knew.
It's amazing all the people I've been able to get in contact with after
all this time. Our daughter is 10 years old with CDC. We had a hard time
getting any info at all up until recently. Now we actually get to contact
CDC people. Truly wonderful. Keep up the good work, Jeff.
Email Address: tpollard@iaccess.com.au
How did you find this page?: Just strolled
on by
Feedback: Hi. Does anyone have any ideas
on toilet training? Scott will be 5 in December and our big problem is
toilleting. We are looking at schools for him for next year and most say
they will take special needs children but not in nappies. Please help us
if you can.
Email Address: vlinehan@newtel.com
How did you find this page?: From a link
on another page
Feedback: I found your page from www.fiveminus.org.
Looks great. My 14 year old niece has cri-du-chat syndrome and her mother
has asked me to search the Web to make contacts to share information. Right
now, of specific interest is issues concerning puberty. Please write. Regards,
Val
Email Address: PHayes6643@aol.com
How did you find this page?: From the U-NET
page index
Feedback: Thank you for alll of this great
information, We have a 6 year old daughter with cri du chat and any information
that you want to e-mail would be great!
Email Address: sbna@idt.net
How did you find this page?: A search engine
Feedback: I am the father of a 24 year old
girl with cdc. When she was born we read all the available literature in
under two hours. What a fright and what a collection of only the "bad end"
of the bell curve. Keep up the good work.
Email Address: bja@post3.tele.dk
How did you find this page?: Word of mouth
Feedback: Hi I only recently heard about
this homepage at our anual conference in the Danish support group for CDC
children and their families. I've already spent a good bit of time exploring
it, and I have really enjoyed reading about children and their families
from all over the world. My daughter Joan (almost 3 years old) was diagnosed
Cri du chat at birth. She's doing great, a lot better than I had ever imagined,
but I also, as many other parents got the worst possible information in
the beginning. I later got in touch with the Danish support group, and
through them I got in touch with Erik Niebuhr, who is a great capacity
on CDC in Denmark. He told me a quite different story, than the first doctors
and that really cheered me up. Thanks for a great homepage.
Email Address:
How did you find this page?: Word of mouth
Feedback: I am a member of the cdc group
in Australia . I am coming over to the UK for a month in October. Would
be interested in meeting any other parents with boys of a similar age whilst
I am in the UK as they are pretty rare but of cause special. Great site,
thanks Jeff
Email Address: Perkins@home.com
How did you find this page?: A search engine
Feedback: I work as a Crisis Advisor for
persons with developmental disabilities in Alameda Co. CA. I have been
doing this for 9 months now and it is the first time the job has ever been
tried. So far we have great results from the consulting I provide to parents
and B&C operaters. When persons with developmental disabilities are
having any behavioral difficulties I am often sent out to the homes to
look for resolution to the problems. What makes this job different than
a behaviorist is that I am available 24 hours a day to provide this service
and I go into what seem to be hopeless or dangerous situations where a
person will be taken away on a 5150 (danger to self or others). Through
commmunication, behavioral techniques, and alternative living arrangements
I have seen a lot of success in resolving these difficult situations. I
hope to be able to share information on this site that will help to resolve
difficulties that others are experiancing with their sons and daughters.
I will return often and respond to any questions people might have. I am
a Candidate for a MFCC and intend to continue working on intervention strategies.
I came to this page seeking more information on the particular aspects
of problems people are faced with. I think this is a great site and it
is inspiring to see such a great support group come together. Thank you
again for the great site. God Bless, John
Email Address: Jen907
How did you find this page?: A search engine
Feedback: My Neice has Crid Chat and I wanted
to find out more about the syndrom. I'm very excited to have found this
page and will tell my sister about it!
Email Address: Willits@bvsd.k12.co.us
How did you find this page?: A search engine
Feedback: I love this site. It gives my family
hope. You can find my letter at the Rare (Ginetic?) Disieses in young Children
Email Address:
How did you find this page?: From a link
on another page
Feedback: I am a grad student in communicative
disorders and am to evaluate a client with cri du chat syndrome. I found
your website through the family village website ... It was very helpful,
thank you very much! I now have a notion as to what I should expect when
I first meet this client. Thanks again, Beth.
Email Address: LGreerRBC@aol.com
How did you find this page?: A search engine
Feedback: My daughter has a chromosome translocation
of 5 and 9 and possibly missing part of 5. I've been searching the internet
looking for others who may have this same translocation and ran across
your support group. She is developmentally delayed in speech, gross, and
fine motor skills. At first the doctors were calling her "failure to thrive"
because she has very little muscle tone and gains weight very slowly. Your
support group page is very interesting because my daughter has all the
symptoms of the syndrome, but no cat-like cry. I wonder if she has a version
of this syndrome?
Email Address: roll3705@ix.netcom.com
How did you find this page?: From a link
on another page
Feedback: My daughter has Down Syndrome,
but one of the other children in the special ed class has cri-du-chat so
I was interested in finding out what I could. Great work on the page!
Email Address: pbart@admn.phs.nebo.edu
How did you find this page?: A search engine
Feedback: We have an eleven year old son
who has mosaic cri-du-chat. If there is anyone with a similar situation
we would appreciate your correspondance.
Email Address: zhassmann@aol.com
How did you find this page?: A search engine
Feedback: We have a daughter, Jo Beth, who
is thirty years old and was diagnosed at about 6 years old with cri du
chat.
Email Address: jnoble@coe.unomaha.edu
How did you find this page?: A search engine
Feedback: I teach Adapted Physical Education
at the University of Nebraska at Omaha (USA) and have a student who is
working with a girl with Cri-Du-Chat during her practical experience. This
site is giving me some good information to pass along. Thanks.
Email Address:
How did you find this page?: A search engine
Feedback: I am a Special Education Teacher
and one of my students has Cri du Chat. She is such a joy to teach!!! My
daughter is interested in researching Cri du Chat for her science project.
Email Address: IEMwright@aol.com
How did you find this page?: From a link
on another page
Feedback: Howdy from Texas. This site is
really beautiful. The poem is so touching. I have been asked to find out
about this disorder for a lady in Windsor, Canada. Her son is 51 (fifty-one!)
and they just told her that this is what he has. He has been institutionalized
his whole life. This is so sad. I am not having much luck finding things
that are printable. Alot of sites are giving me a "not found". I will try
again. Diane in Austin
Email Address:
How did you find this page?: A search engine
Feedback: I am a student at Coppin College
in Balt., MD, studying for a Special Education Degree. All children are
special to me. Thanks for setting up this page and giving such needed information.
Email Address: pq_hatch@candw.ky
How did you find this page?: A search engine
Feedback: thank you very much!
Email Address: 70713.1757@compuserve.com
How did you find this page?: Word of mouth
Feedback: I am a behavior specialist at a
center school in DeLand, Florida. Our school serves a couple of students
with Cri-Du-Chat. A parent of one of these students gave me a hard copy
of the "Fed Up With Those Dribbles?" and "MACAW - Talking Machine" link.
She is very interested in finding out more about both of these. However,
we do not recognize or understand the number left in the "Fed Up With Those
Dribbles?" piece. It must be international??? Any help would be greatly
appreciated!
Email Address: CIRCUIT1@prodigy.net
How did you find this page?: Just strolled
on by
Feedback: I have a two year old daughter,
Megan, who was just diagnosed with C.D.C. five months ago and I really
appreciate any information I can get. Thanks, Susan
Email Address: 73002.2003@compuserve.com
How did you find this page?: A search engine
Feedback: looking for info for a friend.
will pass this along
Email Address:
How did you find this page?: A search engine
Feedback: I work as a teaching assistant
with a 14 year old girl that has CDC Syndrome and was interested in finding
information on this not well publicized syndrome. I found a wealth of information
here...thanx!! I'll be in touch!
Email Address: dfeobrien@juno.com
How did you find this page?: From a link
on another page
Feedback: My wife had this page bookmarked.
Eight years ago our first daughter was diagnosed w/CriDuChat. She only
lived for six weeks, but changed our lives forever. Meg has had a profound
affect on all that we have done since. She has shown us where the important
things are in life. We miss her deeply even now. Keep the search for awareness
going thank you.
Email Address:
How did you find this page?: Just strolled
on by
Feedback: great and informative, we have
a son ryan who is 17 yrs old. We belong to the 5p minus group.
Email Address: norweign@gate.net
How did you find this page?: Word of mouth
Feedback: We have a five month old daughter,
Brooke, who was diagnosed with CDC from birth. She has alot of the features
we have read about and the cutiest little cry. We have learned so much
in a small time. She is a beautiful little girl. We look forward to being
a part of this support group.
Email Address: halchri1@lycoming.edu
How did you find this page?: A search engine
Feedback: Doing a paper for my Genetics class.
Thanks for the info.
Email Address: maggiecdc@bigfoot.com
How did you find this page?: Just strolled
on by
Feedback: We have been contacted by a family
in Chile who speak Spanish. Their 2 year old daughter has cri du chat syndrome.
They have never met any other children with CDC, know very little about
cri du chat syndrome and are desperate for contact with other families
in South America who also speak Spanish. The do not have email but can
send faxes or telephone. Please contact me for details.
Email Address:
How did you find this page?: From a link
on another page
Feedback: Need help with Cri du Chat young
man. Problem behavior is tendency to strip off clothing in public places
including school. He is 19 years old attending a special ed High School.
Behavioral approaches have failed. Has anyone else encountered this particular
behavior, and if so, how has it been resolved? I am an occupational therapist
consulting on this case and will attempt to use a sensory processing approach.
Please offer whatever advice you may have. Thank you.
Email Address: wex006@mail.connect.more.net
How did you find this page?: Word of mouth
Feedback: I am a teacher of a child with
Cri-Du-Chat. If you have any information that could help me to teach her
anything, I would appreciate the help. This is the address of the librarian
at Brookfield R-III Middle school in Brookfield, Mo. She will pass any
information you have on to me.
Email Address:
How did you find this page?: A search engine
Feedback: Hi! Thanks so much for the very
informative and interesting web pages. I am 14 years old and go to St.
John's School in Houston, Tx. I am doing a research project on the Cri
Du Chat Syndrome. Information is rare on this topic, and this web page
is like a gold mine! When I first signed up for this topic I had absolutely
no idea how much it would change my life and my perspective of life. Thank
you so much. Sincerely, Robin
Email Address: jan.moller@stockholm.mail.telia.com
How did you find this page?: Just strolled
on by
Feedback: I live in Sweden. My son, Johannes
got CDC. He's 3½ year. Feel free e-mail me.
Email Address: thatddog@aol.com
How did you find this page?: Word of mouth
Feedback: love the pix
Email Address: cuda19@hotmail.com
How did you find this page?: From a link
on another page
Feedback: I was assigned to do a report on
a genetic defect for my Biology Honors class at Provo High School in Provo,
Utah, and from the list of topics that we were given, I chose Cri du Chat
Syndrome. I haven't been able to find much imformation in very on the subject
in very many places, although I have found quite a bit from this I-net
site. I was wondering if you could tell me anymore about the syndrome,
like what causes the 5th chromosome to be formed as it is, or what is the
average mentality and age level that people with 5p- reach. I need any
imformation you might have on this subject. Also, I am looking into a job
working with mentally retarded children when I graduate from high school,
and possibly getting a degree in college that has to do with the care of
mentally retarded children. I want to get all the imformation and techniques
I can get on looking after these children. If you have any advice or suggestions,
please tell me. Who knows, maybe when I get older I could adopt and care
for one of the 'angels'. Thank you for your cooperation and help. Sincerely,
Kira Brooke Kapp
Email Address: adprecious@aol.com
How did you find this page?: Word of mouth
Feedback: My Son Sam is 7 years old and has
Mosaic Cri du Chat Plus additional material from another chromosome. At
birth he was 18% mosaic in blood. This has changed and now is less than
5% Mosaic in blood. We dont know were the other material comes from yet
but the people in white coats are still working. As he has two disorders
he is severely disabled. However he sleeps now!!!, started to walk at 6,
has two signs hello and goodbye,sometimes feeds himself, loves music, dribbles
but he is having the op soon (it works!). I have a picture that I will
mail to jeff for the site. Good luck regards Adam and Elaine. Please feel
free to email us we play an active part in the UK CDC Support Group
Email Address: bl719@gre.ac.uk
How did you find this page?: Just strolled
on by
Feedback: Really helpful, lots of information,
but no one is on the chat the same time as me, and no one answered my question,
but apart from that it's been a real help - thanks
Email Address: CCJ41@AOL.COM
How did you find this page?: A search engine
Feedback: We were parents of a girl with
CDC plus Trisomy 10P. We are new to the internet and discovered this site.
We were never really able to gather information from doctors or other sources
beacuse her disorder was rare (having 2 disorders). Now we hope to find
information on others who may have or have heard of an additional disorder
with CDC. If you know or can provide info, please e-mail. Thanks
Email Address: dsully@oklahoma.net
How did you find this page?: Just strolled
on by
Feedback: I am grandmother of macy marshall
who lives in hutchinson ks. macy is 11 yrs. old with cri-du-chat syndrom.
I have attended 3 conferences which have been very educational and enlightening.
thanks for the good work and support.
Email Address: idareaveley@webtv.net
How did you find this page?: From the U-NET
page index
Feedback: Hi Cri-Du-Syndrome Families. I
have a little girl with CDC who is 22 months old. I do not have the internet
at home, but I am visiting my parents for the holidays and am having alot
of fun looking up stuff on cri du chat. I will only be at this web site
until January 6. It is my moms address. I'd love to hear from you
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