Cri-du-Chat Syndrome Support Group

Sunday, January 09 - 2000 at 03:49:11

Name: Eugene and Carolyn Owden
Email Address: owden@acninc.net
How did you find this page?: From a link on another page
Feedback: Talk about an answered prayer! I have been wondering if these children were the "forgotten ones." I have been hoping for the last past 18 years if there was such a group as this. Where I'm from, Chicago, there isn't a lot of information or shall I say "enough" information for my family to find the exact pin-pointed support groups. I want to say thank-you, thank-you,thank-you. Where can I send a picture of our daughter, Eugenia, to? And lets stay in touch. I have so much to comment on my experiences with our daughter we call Gena. {January 8, 2000.} This was the best present I ever invested in. A Computer Please anyone feel free to ask us any questions about our family-life..

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Thursday, January 13 - 2000 at 02:24:27

Name: Herman Fultz
Email Address: feh4336@yahoo.com
How did you find this page?: From a link on another page
Feedback: My Grandosn has Cri du chat, and turned 19 today. I neeed to make contact with other family members with cri du chat children

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Saturday, January 15 - 2000 at 17:28:43

Name: judith christ
Email Address: amchrist@usfamily.net
How did you find this page?: From a link on another page
Feedback: We have a 16 yr. old daughter with CDC. She is 3rd of 6 children. Betsy can walk and has limited language. Although she has been heard to sing several Christmas songs if she thinks no one else is around. We have cycles of behavior problems but have chosen not to use medications, at this point anyway. We have a couple of major trips coming up and I am apprehensive. Any suggestions?

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Saturday, January 15 - 2000 at 18:12:57

Name: Jenny Hayes
Email Address: mommybird99@hotmail.com
How did you find this page?: Word of mouth
Feedback: Hi, I haven't visited this site in a long time but we just got a new computer and it's much faster. We have an 8 year daughter with cdc. She is doing well except for her behavior. We started her on a medication about five weeks ago, we really didn't wan't to but we didn't know what else to do. So far we have not seen any improvement. She also pulls her hair out and eats it and the sever constipation like most cdc kids. If anyone has found anything that works, please email me. This is a great site for parents of cdc kids, alot of support. Great job!!

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Monday, January 17 - 2000 at 00:00:31

Name: robert brett and tonya brett
Email Address: bobbieb169@yahoo.com
How did you find this page?: Word of mouth
Feedback: great way to learn about cdc and to make friends

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Monday, January 17 - 2000 at 22:21:33

Name: Hauswirth Brigitte (Suisse)
Email Address: brhauswirth@dplanet.ch
How did you find this page?: Word of mouth
Feedback: Bonjour, J'habite en Suisse et vous signale que j'ai créé avec une autre maman l'association du syndrome en Suisse. J'ai 3 enfants de 6,5 et 2 ans dont la première est atteinte du syndrome du cri-du-chat. L'autre maman a 4 enfants de 11,10,9 et 4 ans dont la troisième Caroline est atteinte. L'association a été créée en 1999 et nous sommes actuellement 10 familles au sein de l'association dont plusieurs en France. Notre but est surtout de pouvoir échanger des contacts avec des familles parlant français. Si vous êtes intéressé n'hésiter pas à communiquer avec nous, cela nous rendrais très heureuses.

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Tuesday, January 25 - 2000 at 01:15:36

Name: Laura
Email Address: Laura3223@usa.net
How did you find this page?: Word of mouth
Feedback: Hello, my name is Laura. I am 12 years old, and I live in Dallas TX, USA. For about a year I have been very interestred in helping kids with disabilities. Over the summer I volunteered at a special camp for kids with disabilities called Camp Summit, and I met a little girl there who had Cri du Chat Syndrome. Her name was Julie. I helped out in her cabin and soon became great friends with her. Now it has been 6 months since camp but we are still best friends and see each other a lot. I have been researching Cri du Chat ever since I met her. Even though Julie has a disability and can't talk well, I'm glad to be her friend, and she's a wonderful little girl. Please e-mail me or send me an instant message at SpecialFriendTx. This is a GREAT and informative page. Thanks!

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Wednesday, January 26 - 2000 at 23:51:48

Name: Miss Nicole Hnederson
Email Address: nicolenicole@netzero.net
How did you find this page?: Word of mouth
Feedback: My Daughter is 15years old,I would like to know more about CDC in kids this age.What to expect when she start her monthly. My Daughter has a real bad overbite problem with her tooth.I can't find a dentist that will help me with this problem,Her Teacher and speech teacher,said that if I could find someone to help me with this problem that Kristal my daughter could talk.Its hard being a parent with a child with a diability.When you dont have anyone to help you. Thank you Miss Henderson

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Friday, January 28 - 2000 at 00:48:57

Name: Kathryn
Email Address: curdled@xtra.co.nz
How did you find this page?: From a link on another page
Feedback: My Daughter Rachel is a cri du chat mosaic. She is 15 years old. We live in New Zeland and may be interested in going to the conference this year. I would appreciate some information about it. Thanks.

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Friday, January 28 - 2000 at 19:28:26

Name: Jill Holsen
Email Address: holsenj@mhd1.moorhead.msus.edu
How did you find this page?: A search engine
Feedback: I've just recently discovered the resources the internet can provide. My daughter will be 24 in May. I thought that today's parents would be getting much better advice, but having read your comments, it doesn't sound like it. Katy is relatively health, walks, talks--a lot, can feed herself, was potty-trained early. She also has behavior problems, although I have resisted the temptation to medicate. We have tried all sorts of behavior modification programs. I agreed recently to trying something, although I felt the psychologist was too quick to medicate. She's trying Paxil for a couple of months, although so far it doesn't seem to be doing anything. I would be interested to hear if any other medications have helped.

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Friday, February 04 - 2000 at 01:59:11

Name: Kris Cintron
Email Address:
How did you find this page?: From a link on another page
Feedback: Very new to all of this. Just very glad to know we arn't the only ones. Also glad to know there is somewhere to go for support and ideas.

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Monday, February 14 - 2000 at 01:19:30

Name: Becca
Email Address: beaniebec@aol.com
How did you find this page?: A search engine
Feedback: This sight was great! I have to do a report on cri-du-chat, and this helped me a lot. I have now taken a lot of interest in this syndrome. Thanks for all the info!

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Monday, February 14 - 2000 at 20:51:45

Name: kevin and Jane steel
Email Address: kevin@yorkshire-web.co.uk
How did you find this page?: Word of mouth
Feedback: message for adrian and tracy sanger in Barnsley, south yorks. Ade, saw the pics of Aimee Ann the other day, she looks beautiful, get back to work there is lots to do!

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Thursday, February 17 - 2000 at 05:17:32

Name: tracy copeland
Email Address: copeland1@msn.com
How did you find this page?: A search engine
Feedback: My son Michael is 10 months old today. We just got the results back from the chromosome test and Michael has a terminal deletion 15.2. I have read every thing and although I am possitive I feel like the outcome is hopeless. I have read nothing that indicates hope or any good news inregards to the potential of this syndrome. I would like to hear from someone that has a simular deletion. Any one ever hear of a normal or close to normal outcome? I am desparate for something to hold on to.

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Thursday, February 17 - 2000 at 18:02:42

Name: Tracy Leahon
Email Address: Treighsie@aol.com
How did you find this page?: Word of mouth
Feedback: My niece Janel has Cri-Du-Chat, and my sister showed me this website. I'm really glad it's around, for her sake, because this disorder is so rare! I look foward to seeing Janel's pictures on this site. It's very well done...thank you.

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Monday, February 21 - 2000 at 14:15:17

Name: Lloyd L. Cannaday
Email Address: Cannaday@ramcell.net
How did you find this page?: Word of mouth
Feedback: My niece just had a little boy with this condition. I am interested in finding out more about it.

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Tuesday, February 22 - 2000 at 20:40:47

Name: LaRayne
Email Address: wills@midstatesd.net
How did you find this page?: Word of mouth
Feedback: I am looking for some information on techniques for special services for children of cri-du-chat. I work with an eight year old boy, and I am writing a paper on the syndrome as well. I was wondering if there were special techniques speech, special ed, or other educators used for this type of learning disability.

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Saturday, February 26 - 2000 at 22:16:52

Name: LaRayne
Email Address: wills@midstatesd.net
How did you find this page?: Word of mouth
Feedback: I learned a lot about cdc, both emotion and physical information. I am looking for some "speech" information so that I can help the little boy I am working with at school to say more than Mom!! He has potential if we can bring it out of him!

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Sunday, February 27 - 2000 at 17:14:27

Name: Nicole Henderson
Email Address: nicolenicole@netzero.net
How did you find this page?: Word of mouth
Feedback: I have 15 years old daughter with cri-du-chats, I am trying to find things on when that become teenager.Its hard to find things.I cant find a dentist in my area that will see her.Kristal is my daughter name.she love to hug,but i have to tell her that she cant hug everyone.she is very friendly.ITs get hard sometime to dral with her but with the trust in the Lord I know that he wull get me though it some how Kristal khows when I am up set,she dont like to see people cry it scary her,she is also afriead of loud noise I am divorce mother of 3 kids ,to boys 18and20,they didnt get CDC.They help me with Kristal Kristal is so close to me,she will not get off, her school bus until she see me.I am around her 24 huor a day.Her father dont play a role in helping me raise Kristal.She always want me around her all the time. So if someone can help me with some information please let me know.I am from Atlanta Ga 404-243-6601or404622-5210 Please call me or e-mail me Thank You NIcole Henderson Mother In Help

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Monday, February 28 - 2000 at 00:06:43

Name: Lexi Andrews
Email Address:
How did you find this page?: A search engine
Feedback: I am glad that i stumbles upon this web site so that i could learn more about this syndrome. I also feel lucky that there is nothing wrong with me.

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Tuesday, February 29 - 2000 at 06:45:48

Name: Bonnie McKeown
Email Address: bmckeown@telus.net
How did you find this page?: A search engine
Feedback: I would like to know of a support group in Canada, my niece has a baby that has cridushat syndrome. It is very interesting to watch and to listen to the baby. We live in Chilliwack and the baby lives here also. We would like more information about what to do and who to talk to around the Valley out here. It is very stressful for a young couple like them to go through and they just were married about only 3 years now. It really put a strain on their relationship. It is so hard for both of them. The baby looses his breath lots and it is so scarey for all of the family when they are visiting at family functions. He has a reflux problem the Doctor said to her. Well I hope to hear from someone soon. Thank-you very much! Sincerely, Bonnie McKeown

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Wednesday, March 01 - 2000 at 03:29:24

Name: Jose de Oliveira Filho
Email Address: grilo@originet.com.br
How did you find this page?: A search engine
Feedback: Í'am Bruno's uncle. we live in Sao Paulo Brazil and would like change informations about cdc. there are a photo of Bruno in picture galery but our e-mail moved grilo@originet.com.br congratulations for your home page. tanks a lot.

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Monday, March 06 - 2000 at 16:05:54

Name: Joanne Hall
Email Address: criduch@tsurvey.fsnet.co.uk
How did you find this page?: Word of mouth
Feedback: Hi, I have a younger brother Stuart with CDC and find this website really useful. I am also carrying out a survey about CDC children for my final year at BTEC. If anyone would like to fill in the questionnaire I would be very grateful. You will find it at www.tsurvey.fsnet.co.uk Cheers

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Monday, March 06 - 2000 at 18:25:33

Name: Joy Pittman
Email Address: pittman2@altavista.com
How did you find this page?: A search engine
Feedback: I have a thirteen year old daughter with CDC. I have never known of anyone else with a child with the syndrome. I just recently got on the net and found this website. It is really great to know I'm not alone. There are so many simalarities in behaviors and likes and dislikes It's amazing. I'm looking forward to more comunication and Information. I wish I had had this thirteen years ago.

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Wednesday, March 08 - 2000 at 06:54:48

Name: Jane New
Email Address: JaneNewCA@aol.com
How did you find this page?: A search engine
Feedback: As the mother of a 29 year old son with Cri-da-Chat syndrome, I found your website very interesting. I am interested in getting in touch with parents of older children. I looked at a lot of the pictures in the gallery and the majority of the children were very young. I have been at this "busniess" of raising a child with 5p- for over 29 years and if there is anything I can do to help someone else --- let me know. I have not been active in the family support group in America, but I hope to be in the future. Thanks..............Jane Neww

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Friday, March 10 - 2000 at 16:31:43

Name: Sara Jean-Paul
Email Address:
How did you find this page?: A search engine
Feedback: I'm doing a report on cri du chat and before I picked it I had never even heard of it. I just wanted to say that I think this is a great website and the best of luck to all of you and your families. God bless!

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Friday, March 10 - 2000 at 18:20:05

Name: JACKIE FOSTER
Email Address: jfoster@toolcity.net
How did you find this page?: From a link on another page
Feedback: I'm a speech/language pathologist and was browsing through some information on the net. Came upon this syndrome and had never heard of it so checked you out. Would like to know more about speech/voice/language abilities and disorders that are common with CDC and treatments.

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Sunday, March 12 - 2000 at 02:08:34

Name: LANEVE ALEJANDRO
Email Address: LANEVEALEJANDRO@AOL.COM
How did you find this page?: A search engine
Feedback: I have a daughter (Alayna) that is 11 years old with CriDuChat. This is the first time I have visited the web and was pleased with all of the information. If someone reads this and also has a child with CriduChat, please let me hear from you.

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Sunday, March 12 - 2000 at 10:35:06

Name: Tania
Email Address: dalzotto@tne.net.au
How did you find this page?: A search engine
Feedback: I am hoping someone could contact me to let me know what day/time the support chat room is open in South Australian time. I have a friend who has a son with CDC and she does not have access to a computer at home but she is welcome to use my computer to make contact with this chatroom. I would like to be able to tell her what day/time to come over to do this. I have told her how wonderful this site is and she is looking forward to spending some time reading through it. Also I am a student teacher(also special education) and have found this site very informative from the point of view of someone who knew little about this disability. Looking through the photos, histories of children has really allowed me to see/learn a more realistic view of children who have CDC.It's more than I can read from text books or learn at University as I am able to read about the children and what they can do not what they necessarily can't do. What a positive and touching experience!!! Thankyou

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Monday, March 13 - 2000 at 00:07:32

Name: Helen McGrath
Email Address: helliemac@ozemail.com.au
How did you find this page?: Word of mouth
Feedback: I have a 10 year old daugther, Hanne, with CDC

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Saturday, March 18 - 2000 at 11:37:53

Name: Joanne
Email Address: criduch@tsurvey.fsnet.co.uk
How did you find this page?: Word of mouth
Feedback: Hi, the CDC websites are brilliant. I have a fifteen year old brother Stuart who has CDC. I am also studying CDC as part of my BTEC course. If anyone would like to fill out a questionnaire about education and CDC please go to www.tsurvey.fsnet.co.uk All info is kept confidential Cheers

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Tuesday, March 21 - 2000 at 06:26:29

Name: Dwayne&Jalean Blank
Email Address: jalean_4@hotmail.com
How did you find this page?: From a link on another page
Feedback: We are Happy too see that there is support for parents with children with CDC..It has been stressfull for us for the first 3months of our sons live ..But we love our Weston(angel) born NOV,30 1999. We could have lost him a couple of times. For any parents haveing problems with a baby that has breathing problems definately get a swallow test done ...our son didnt get one until 3months of age..the doctor found out that he has silent REFLUX...so he could have gone in his sleep....we are so happy he is still here with us ..A lot of praying from family & friends...It is remarkable how close our whole family has become and this little soul made this happen:-) We love him with all our hearts...ANYONE E-MAIL US .. WE WOULD LOVE TO HEAR FROM YOU!!!!!!

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Thursday, March 23 - 2000 at 02:23:34

Name: Rosalie Mac Donald
Email Address: arm.macdonald@ns.sympatico.ca or at work rosalie.macdonald@go.ednet.ns.ca
How did you find this page?: From a link on another page
Feedback: I will be having a studdent entering my school in Sept. 2000 with cri du chat syndrome. I am responsible for programming and would appreciate any assistance in this area.

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Thursday, March 23 - 2000 at 05:36:43

Name: Laura
Email Address: Laura87@kltymail.com
How did you find this page?: From a link on another page
Feedback: My name is Laura, and I'm 12 years old and I am from Dallas TX. I work with kids who have disabilities at school, church and at a special camp. Almost a year ago, I met a little girl named Julie with Cri Du Chat Syndrome. Some of you from Texas might know the Davenport family, which is Julie's family. Julie is 9 years old. She is my very best friend. Although I only see her once in a while, I love her like a sister. She can't speak but she has a lot to say! This is a great site. Email me at Laura87@kltymail.com or Instant message me at SpecialFriendTx. I am working on a site for kids with Cri Du Chat but it's not up yet. I'll let you know when it is. God bless you!!

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Thursday, March 23 - 2000 at 11:50:20

Name: Bev
Email Address: mummy@usa.net.com
How did you find this page?: A search engine
Feedback: I found your page as I am searching for support groups and up to date info for families I work with. Many of these people know almost nothing about Cri Du Chat, as they are told that there are very few people in Australia with this Symdrome. Any info you could send my way would be greatly appreciated and will also assist my co worker and I in up dating our resources at work. Thankyou Bev.

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Thursday, March 23 - 2000 at 15:37:35

Name: Laura Anderson
Email Address: laura87@kltymail.com
How did you find this page?: Word of mouth
Feedback: My name is Laura and I am 12 years old. I live in Texas. I don't have a brother or sister with Cri-Du-Chat Syndrome, but for about 2 years I have been helping and being a friend to kids with disabilities, and I met a little girl at Camp with Cri-Du-Chat. Her name is Julie and she is 9. Some of you from Texas in U.S. might know the Davenport family, which is Julie's family. Julie has almost no speech, but she uses some sign language and understands almost everything that is said to her. She is a loving, wonderful little girl and always has a hug or a smile ready! And, she is my very best friend. Having CDC really doesn't hold down her spirit! Although she lives far and I only see her once in a while, I love her like she was my little sister. She is a person I will never, ever forget. Since I met her, I have been dedicated to researching Cri-Du-Chat Syndrome and I am making a site about it. Email me at Laura87@kltymail.com or send me an AOL instant message at SpecialFriendTx. I'd love to hear from anyone involved with CDC kids. God bless you!!!! --Laura

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Sunday, March 26 - 2000 at 23:31:34

Name: Helen McGrath
Email Address: helliemac@ozemail.com.au
How did you find this page?: From a link on another page
Feedback: I am the Austrlian parent of Hanne, a delightful 10 yr old. Just letting all know that I have produced a video on Cri Du Chat called "Cry Of The Cat". It is useful for new parents to the syndrome and as a resource for professionals. It gives a positive outlook to the syndrome, with interviews with parents, and professionals and looks at 16 children and adults with the syndrome.

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Monday, March 27 - 2000 at 20:57:16

Name: Cindy Matwyko
Email Address: goldberg@island.net
How did you find this page?: From a link on another page
Feedback: I have a 6 year old daughter (Montana) with CDC.She is basically healthy, and doing well learning sign language.Some behavioral problems, (pulling hair, scratching and head banging).If anyone has any ideas on these, please let me know. Also, any help on toilet training (we're not very successful yet) would be appreciated. Thanks!

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Monday, April 03 - 2000 at 01:57:56

Name: Memama and Dad-o Rowe
Email Address: Birdsonabranch@aol.com
How did you find this page?: Word of mouth
Feedback: We purchased the "Cry of the Cat" video at the 5p-Conference in Lincolnshire, Illinois last August.It is awesome. You will absolutely fall in love with Hanne (child with cri du chat). We were fortunate to meet this precious little girl, who is an inspiration to anyone who is involved in the life of a child with 5p-. Our little granddaughter Catherine is four years old and was diagnosed with the syndrome at birth. After viewing the video, we saw, first hand, that children with cri du chat syndrome can be taught and are eager learners. Only God knows the future of these wonderful children. We were told that Catherine would be a vegetable. She is learning so much so fast and is involved in swimming lessons and will be starting softball soon. Just imagine that from a child with almost complete deletion.

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Monday, April 03 - 2000 at 03:45:14

Name: Kathy Simms
Email Address:
How did you find this page?: Word of mouth
Feedback: My name is kathy and I am a therapist at a child hospital in U.S. I have recently started working with Amy a 18-month old baby with cri-du-chat. She is a pretty girl. she does not walk or talk, and she just recently stopped eating through gastrostomy. Her mother is worried she will need a wheelchair. Their family does not own a computer. I found this site in finding research for them. I hope to help amy in any way I can. I'd be delighted to speak with any Families of Cdc individuals. Good job on support group. Yours, Kathy

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Tuesday, April 04 - 2000 at 17:52:27

Name: Holly Gattone
Email Address: khcgat@webtv.net
How did you find this page?: Word of mouth
Feedback: This site continues to be a wonderful source of support to me and my family. Thanks so much Jeff, for creating such a wonderful site. Your work is truly appreciated!! Our son is now three years old and continues to progress each and every day. He is truly amazing, and is such a trooper for all he has been through. We are so fortunate to have him in our lives!! He teaches us something new everyday.---We love to hear from other parents, so please feel free to email us anytime. Best wishes to you all!!

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Friday, April 07 - 2000 at 02:22:10

Name: Celine
Email Address:
How did you find this page?: From a link on another page
Feedback: I am new to the web but am very glad to have found this site. I have a 17yr old daughter (Lucie)who has CDC. We live in Orillia, Ontario, Canada. I am having difficulties with Lucie and I hope to get help from some of you.

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Tuesday, April 11 - 2000 at 00:26:31

Name: Helen Freno
Email Address: eccat2@aol.com
How did you find this page?: From a link on another page
Feedback: I have a 25 year old daughter with cri-du-chat syndrome.Would like to communicate with other parents.

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Monday, April 17 - 2000 at 23:39:06

Name: Roberta Grant
Email Address: boblex@ic24.net
How did you find this page?: From a link on another page
Feedback: Have professional interest in disabilities.unfortunately am not good at using this internet technology.Could not find information to educate self re this syndrome. Will keep trying.

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Tuesday, April 18 - 2000 at 09:39:51

Name: Jack
Email Address: CRIDUCHATPARENT@aol.com
How did you find this page?: A search engine
Feedback: TELL ANY PARENTS IN THE NYC METROPOLITAN AREA TO CONTACT ME, ESPECIALLY IF THEY ARE NOT HAPPY WITH THEIR LOCAL SCHOOL DISTRICTS. E-MAILS ARE NICE, BUT PHONE CALLS ARE BETTER! I'M SEARCHING FOR SAMPLES OF HIGHLY APPROPRIATE IEP'S, CREATIVE SUGGESTIONS FROM SYMPATHETIC PROFESSIONAL EVALUATORS, IMPARTIAL HEARING DECISIONS, UNUSUAL OR UNIQUE EDUCATIONAL PLANS, ESPECIALLY ANY THAT PARENTS HAVE FOUND TO BE FAR MORE BENEFICIAL THAN THOSE OFFERED BY THEIR SCHOOL DISTRICTS. PARENTS, NATIONWIDE, WILLING TO ACT TOGETHER, CAN INCREASE THE FUNDING AVAILABLE FOR EACH CHILD'S NEEDS BY AS MUCH AS ONE HUNDRED THOUSAND DOLLARS PER SCHOOL YEAR, BY AGGRESSIVELY PURSUING THEIR FEDERAL EDUCATIONAL ENTITLEMENTS, AND BY SHARING INFORMATION ABOUT HOW TO MOST APPROPRIATELY SPEND SUCH FUNDS FOR STUDENTS WITH CDC SYNDROME. I AM INTERESTED IN SPEAKING TO ANYONE WHO WANTS TO KNOW MORE OR WANTS TO HELP. PHONE CALLS ARE WELCOME, EVEN LATE NIGHT ONES @ 718-951-2684.

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Wednesday, April 19 - 2000 at 13:39:53

Name: carrie
Email Address: cnuncio@austin.rr.com
How did you find this page?: A search engine
Feedback: Iwork with a cdc student and am looking for any info on behaviors that are normal for these kids and some that are not. I am also looking for educational info. Thanks

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Friday, April 21 - 2000 at 04:20:00

Name: john yeomans
Email Address: yeomans@psych.utoronto.ca
How did you find this page?: A search engine
Feedback: My daughter Katherine is 18 with CDC 5p14-. She is very healthy and nice to live with, but has trouble making friends, due to weak language skills. At 5'10" she is exceptionally tall and thin, but stronger all the time. We have gone through a lot together but everyone helps out, even her younger sister and brother. We live in Toronto Canada, where the support systems are good. Thanks for your website.

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Tuesday, April 25 - 2000 at 17:22:54

Name: vanessa
Email Address: pubbles513@aol.com
How did you find this page?: From a link on another page
Feedback: i have a daughter she will be 3 in may. when she was born dr. told me she was not going to live a long life and she was't going to talk or walk. right now she saying "dada" she starting to stand along or holding on to things. when i look at her i feel so glad to have her it like the best thing that happen to me. and also to the parents with children or a child with criduchat enjoy them and give them all the love you can give.

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Wednesday, April 26 - 2000 at 21:34:04

Name: Sheila MacGregor
Email Address: macg@supanet.com
How did you find this page?: A search engine
Feedback: I am a teacher with a pupil diagnosed as having cri du chat syndrome and looking for as much information as possible to help me help my pupil to maximise their potential.

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Sunday, April 30 - 2000 at 07:31:44

Name: Gina
Email Address: g_marie4@yahoo.com
How did you find this page?: A search engine
Feedback: I have an almost 8 year old daughter named Anna and she has cdc. I would enjoy chatting with other parents of children with cdc. I am also interested in hearing about how siblings are coping I have a 2yr. old and it can be difficult.So i look forward to hearing from you. Thanks

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Sunday, April 30 - 2000 at 20:44:14

Name: milagros castro
Email Address: milagrosc@prodigy.net.mx
How did you find this page?: From a link on another page
Feedback: My cousin´s son has CDC, she does not have any information in this syndrome, we live in smal town in México and there is no way to have special atention for this kid. I would like to know where she can does, to learn more about how to raise her son. Thank you, and I would like to have more information about this .
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Friday, May 05 - 2000 at 23:27:55

Name: maria garcia
Email Address: mariagar70@aol.com
How did you find this page?: Word of mouth
Feedback: hi, i came in to this page because i have a nephew that has this syndrome and recently he has been getting nose bleeds i was wondering if this is common. could you please look into it and tell me more about it? i would really appreciate it. thanks, maria

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Tuesday, May 09 - 2000 at 00:04:48

Name: allison grant
Email Address: allison@allison88.fsnet.co.uk
How did you find this page?: A search engine
Feedback: i was really impressed my husband carries this defect in his genes we had to have genetic counciling before trying for our children after finding your web site i think our counsilling was terrible and didnt give us a clear picture at all we have three children who are thankfully not affected but the shear terror i felt when i was pregnant was awful i wish i had , had more information then we got hardly any info at all from the hospital just real dome and gloom great site keep up all the hard work and luv to all the kidsxxxx

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Wednesday, May 10 - 2000 at 13:57:47

Name: Kay Kaffey
Email Address: kay @hotlinks .com.au
How did you find this page?: From a link on another page
Feedback: My friend has a child with Ds and I wish to learn about this. I found it helpful Thanks.

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Wednesday, May 10 - 2000 at 20:27:33

Name: Emerald
Email Address: Gemgrl24@hotmail.com
How did you find this page?: A search engine
Feedback: I really think that this support groups web page is wonderful. I wish the best for everyone with this illness and dtheir families. Don't worry, God blesses us all in many different ways. It takes a strong person to make the best of a not so good situation and I am sure everyone who has ever gone through something like this is very strong. Thank goodness someone shows children the love they need.

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Monday, May 15 - 2000 at 02:53:24

Name: Mary Beth Morris
Email Address: m.morris4@gte.net
How did you find this page?: Word of mouth
Feedback: Our Amanda is four and a half years old and doing remarkably well. She has plenty of verbal language and is very healthy and strong, able to run and climb playground equipment. She is almost completely potty trained and counts, sings songs, knows ABC's and many colors. We are most challenged by this syndrome in her behavoirs which are very much like in the autistism spectrum: perseverative, odd play, hypersensitivity to certain sounds and awkward social skills. While she is delayed in many areas, we are so encouraged by her progress and would love to correspond with anyone.

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Wednesday, May 17 - 2000 at 16:29:37

Name: Gwendolyn Campbell
Email Address: radgec@gwumc.edu
How did you find this page?: Word of mouth
Feedback: My name is Gwendolyn Campbell. I live in Washington, DC and my daughter Shannon gave birth to a baby boy who has beenn diagnosed as missing part of a chromosome 5P. We never really heard of this syndrome until now. The baby is still in NICU at Children's Hospital in D.C. My daughter is falling apart and I really don't know what to do or what to expect. Please contact me.

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Friday, May 19 - 2000 at 06:46:39

Name: kieth daniels
Email Address: dankieth@hotmail.com.au
How did you find this page?: From a link on another page
Feedback: HI Guys, just browsing and printing for the Brother of a Cri Du Chat person. I'm a fulltime carer for MARYANNE and others so I thought I'd look and learn and pass it on. keep it Happening! regards; kieth

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Wednesday, May 24 - 2000 at 23:06:32

Name: Katie Raines
Email Address: rainesk@friendship.state.ar.us
How did you find this page?: A search engine
Feedback: I am a Director of a Waiver Program serving people with disabilities in Russellville, Arkansas. I had a mother come in the other day and is choosing us a provider for her two boys with Cri-du-chat. I have never heard of this syndrome and am very interested in information

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Tuesday, May 30 - 2000 at 09:44:08

Name: hester preesman
Email Address: hester_preesman@hotmail.com
How did you find this page?: From a link on another page
Feedback: Hay, It's a very good page to help you with study ! Thank you very much ! Hester

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Tuesday, May 30 - 2000 at 15:57:09

Name: Joice Pong
Email Address: joicepon@mail.apol.com.tw
How did you find this page?: A search engine
Feedback: My kid a 2yrs little girl, is also a case of 5p- and I do need more concrete informations that related to this more helpful and workable for me because we are addressed in Taiwan where seem very few source materials and professional physically & mentally supports.... Therefore, how can we learn more and share more helps from you?? Please send some message to Taiwan here that surely be very appreciated.

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Sunday, June 04 - 2000 at 22:02:52

Name: mara cea
Email Address: mcz77055@msn.email.net
How did you find this page?: Word of mouth
Feedback: i have a nephew that has the syndrome, and would like to find out the syndrome. he is 8 yrs old and loves to play sports.

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Monday, June 05 - 2000 at 00:19:42

Name: Lori Passarelli
Email Address: millpass@aol.com
How did you find this page?: A search engine
Feedback: My daughter Briana Michelle was diagnosed seventeen years ago with cri-du-chat syndrome. She began infant stimulation at two weeks of age,and has been in the special ed system ever since!This year she is a junior in high school and when she graduates she will go on to the local junior college until she is 22 yrs. old! She is very excited about going to college soon! Briana loves to look at the photos on this web sight! especially the babies. In fact as i type this she is saying,"I want to see picture babies" Briana is a very social and happy.I constantly have to tell her to not hug strangers! For several years she had behavior problems that among other things ,consisted of pulling other kids hair and hitting. We have pretty much completely controlled this be consistant behavior mod. and ritalin. (5mg. a.m.-5 mg in early afternoon). Briana is involved in vocational training at school. She has several 'real jobs' within our community. She works one day at the local church, organizing the hymnals and pencils and vacuuming. She has a paper route, does 'beach clean-up, and works at the equestrian center, brushing the horses and feeding them! Briana is such a love and a joy. She has truely been a blessing to our family!

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Wednesday, June 14 - 2000 at 04:28:33

Name: Kristen Waychoff
Email Address: KWBabyface@aol.com
How did you find this page?: Word of mouth
Feedback: I have a 2 year old daughter with CDC. I am finally ready to talk to other parents about her. I have lots of questions!!! It has been a colorful journey to say the least...but a happy one. I was looking for a freind "who has been there before" to help guide me in the right direction. We are just starting to learn to walk, drink from a sippy cup, and have a lazy eye. These are a few of our new challenges. If any one has some advise....please contact me.

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Thursday, June 15 - 2000 at 00:26:12

Name: Janice Hunter
Email Address: ejhunter@wirefire.com
How did you find this page?: From a link on another page
Feedback: my son is two years old and has cri-du-chat. we have been dealing with alot of ear infections and constipation! please feel free to email us with any suggestions. thanks for all the imput at this site.

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Thursday, June 15 - 2000 at 00:38:53

Name: Tammy Sarnicki
Email Address: dntsar@worldnet.att.net
How did you find this page?: From Special Kids WebRing
Feedback: I just had a baby on 3-29-00 who has cri-du chat and am very anxious to talk to the parents of other children who have this same syndrome. I am anxious to know what kind of medical conditions some of the other children have been born with and how they are coping. My little girls name is Hannah and she is our little angel, but we are dealing with solving her heart problems and would love to hear from someone who has had these same problems.

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Tuesday, June 20 - 2000 at 00:25:39

Name: Marta
Email Address: martaramos@ig.com.br
How did you find this page?: From a link on another page
Feedback: Marta from Rio De Janeiro would like to hear from anyone interested in starting a support group for cri du chat syndrome in Brazil. First meeting in July Marta d Rio de Janeiro gostaria de entrar em contato com famílias que moram no Brasil para que juntos possamos começar um grupo de sustentação para o syndrome do grito do gato. Primeira reunião em julho.

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Friday, June 23 - 2000 at 16:50:28

Name: Hamid Alizadeh
Email Address: halizade@vub.ac.be
How did you find this page?: A search engine
Feedback: Dear Madam, Hi, Thanks for your efforts on cri-du-chat Syndrome. I am interested in information about the psychomotor aspects of these children. Thanks

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Friday, July 07 - 2000 at 00:52:12

Name: Jaimee
Email Address:
How did you find this page?: From a link on another page
Feedback: I work with an early intervention group. I just heard of Cri du Chat for the first time. I am very interested in learning more. The family I am working with has a two month old baby girl. She is very healthy and has good muscle tone. So far she has passed all screenings is this a good sign? Or do delays show up later?

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Monday, July 10 - 2000 at 18:04:02

Name: melisa kilpatrick
Email Address: melisamoocw@aol.com
How did you find this page?: A search engine
Feedback: I am glad I found this site. My husband and I have a 2 year old with cri du chat and turner syndromes. The doctors told us she is the only one they know of with 2 syndromes.

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Thursday, July 13 - 2000 at 11:45:22

Name: Linda Martin
Email Address:
How did you find this page?: A search engine
Feedback: My 7 month old nephew, Ben was diagnosed a month ago with cdc and I wanted to obtain some information so I can be of support to him and his parents. I will pass on the web site details to them although they may already know about it. It has been very helpful and gives hope for Bens future. God bless you all.

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Saturday, July 22 - 2000 at 14:49:06

Name: Derita Adams
Email Address: MA DA RBJ @AOL.COM
How did you find this page?: From a link on another page
Feedback: HI I AM THE MOTHER OF A 9 YEAR OLD GIRL. WE LIVE IN GEORGIA USA. FROM THE WEB PAGE IN USA IT SAYS THAT YOU HAVE A 22 PAGE BOOKLET AVAILABLE. I AM INTERESTED IN GETTING A COPY. HOW CAN I GET A COPY? THANKYOU. DERITA ADAMS

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Sunday, August 06 - 2000 at 01:33:58

Name: Nancy Hyde
Email Address: nhyde@mindspring.co9m
How did you find this page?: From a link on another page
Feedback: I'm the mother of Stephen, 8 yrs old with CDC, in Suwanee (Atlanta), Georgia. We are trying Risperdal now for behavior but I'm still researching meds. This is a fabulous web site.

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Thursday, August 10 - 2000 at 01:00:30

Name: Etina Tapaki
Email Address:
How did you find this page?: From a link on another page
Feedback: Excellent site! High school student from Woree, Queensland, Australia. Working on an assignment on children with special needs. My 12 year old sister has CDC and didn't know much on the causes of the syndrome (or anything!) and found your site very informative. Guess I feel I know more about my sister now! Thank you!!!

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Saturday, August 12 - 2000 at 05:05:40

Name: Mrs R Craig
Email Address: accountant@bwave.com
How did you find this page?: Word of mouth
Feedback: Hello, Love the page!!! Its good to see and read about other CDC Kids. My son Michael (turned 11 on May16, 2000) has CDC. He wasn't diagnosed until he was 3 years old. He is walking and getting into everything!!!As far as potty training goes, we are working on it...he does ok...but doesn't let me know when he has to go. We are also using pictures from Mayer-Johnson for communication since he has no speech. Michael has been a joy to my life. He knows no strangers...and smiles at everyone. Anyone who would like to can email me. I welcome the chance to talk to other parents. I will return often to see whats new. Thank you

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Wednesday, August 23 - 2000 at 05:36:10

Name: Tedi Ross-Smith
Email Address: bearlyher@aol.com
How did you find this page?: A search engine
Feedback: I am a nurse with a patient who recently delivered a baby with severe anomalies. We are looking for the most current information on the syndrome and best resources to refer the family to. Thanks, Tedi

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Wednesday, August 30 - 2000 at 01:46:52

Name: carrie nuncio
Email Address: cnuncio@austin.rr.com
How did you find this page?: A search engine
Feedback: I work with a cdc student and am looking for some info about behaviors and also about this years conference in Florida. If you can help please send me and e-mail. thanks

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Wednesday, August 30 - 2000 at 17:30:28

Name: Carolyn Brooks
Email Address: cfbrooks_iowa@yahoo.com
How did you find this page?: A search engine
Feedback: I lost my son 11 years ago, born with this syndrome. Wanted more information on it.

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Sunday, September 03 - 2000 at 22:05:35

Name: Brigitte Hauswirth
Email Address: brhauswirth@dplanet.ch
How did you find this page?: Word of mouth
Feedback: Bonjour ! Je voulais vous informer que j'ai créé en Suisse une association francophone du syndrome du Cri-du-Chat. Voici l'adresse du site internet : http://site.voila.fr/criduchat N'hésitez pas et allez le voir !!!! Merci !!

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Sunday, September 03 - 2000 at 22:32:34

Name: ellen
Email Address: el_45@hotmail.com
How did you find this page?: From a link on another page
Feedback: hi! i'm a young person with cdc and it hasn't really affected me that much. i have trouble with muscle control, hand-eye co-ordination, maths and sometimes with my motor control. my sense of balance could be better but i think i've learnt 2 accept that i'll always fall over! email me at the above address if u want 2 no more about me and cdc. byeeeeeeeeeee!!!!!!!!

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Wednesday, September 06 - 2000 at 14:43:05

Name: Anne
Email Address: ASchnep@AOL
How did you find this page?: Word of mouth
Feedback: I am Working as a 0ne-on-one aide for a 12-year-old boy in a public elementary school. I do not have much information available to me regarding Cri-du-Chat syndrome. I'm sure it would be invaluable to me to learn more. He is a wonderful child. After reading through this information, my opinion is that his condition is quite severe. I would love to be able to make his life and that of his family a bit easier through my work with him. I'm not sure how to ask for your help, any information or direction you can provide me will be greatly appreciated! Thanks so much.

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Thursday, September 21 - 2000 at 13:23:53

Name: Alicia Alvarez de Pergolini
Email Address: sheivet@hotmail.com
How did you find this page?: From a link on another page
Feedback: Hello. I am Argentinian. I have a five-year- old daughter called Gina. She suffers from CRI DU CHAT SYNDROME. She also cannot control thorax muscles movement ( Hipotonia, as it is called in my language) Can you send me information about this syndrome? I am interested in information about these children evolution, medical treatment and possible educational activities they can undergo. Thank you very much. I look forward to reading about you, Alicia Alvarez

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Friday, September 22 - 2000 at 04:05:57

Name: misty
Email Address: littlbug@ipa.net
How did you find this page?: A search engine
Feedback: I am so glad I found this. I have been searching everywhere for a chatroom for parents with disabled children. my son has down syndrome. If anyone is interested in e-mailing me about him, please do. Beautiful pictures of your children here.

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Thursday, September 28 - 2000 at 02:26:52

Name: Amy Propst
Email Address:
How did you find this page?: Word of mouth
Feedback: I am a mother of a beautiful 2 year old girl with cri du chat syndrome. As soon as I find out this e mail address I would like to hear from other parents

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Thursday, September 28 - 2000 at 22:00:49

Name: Amber Hamilton
Email Address:
How did you find this page?: A search engine
Feedback: I'm 18 and just had a baby girl on sept.15,2000. She was diagnosed with cdc about a week later. I would really like to speak to some others with this situation. I'll try the chatroom later. thanks for all the information I've already found on this website.

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