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Mark Burton |
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| Very impressive site and support group - I learned a lot. | 18 June 2009 10:28am Manchester, UK |
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Diane |
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| My daughter Tahla is 17 yrs old & was diagnosed with CS at age of 10. Tahla's school teacher is organising a fundraiser to get Tahla & myself over to this years CS seminar at Doubletree Hotel in Berkeley Marina California. This will be our FIRST seminar & I cant wait to meet all the families who like me have a child with this very rare disease of Costello's Syndrome, & to meet the Drs who specialise in this syndrome will be a dream come true, because Drs here in Australia have very little knowledge, & know how of this rare disease. Im just so over getting NOWHERE in the form of treatment for Tahla, & it totally rips my heart apart, that is why I just have to get us over there for the 2009 seminar. Plus we would dearly love to meet people & families who are travelling the same road as Tahla & myself & there are so many questions and so many answers that we desperatley need for Tahla's health & well being. In QLD Australia' where we live there are only "2" other known CS cases, & if they could reply to this letter we can swap what different knowledge that we share. Also im having a difficult time trying to find Leonie & Lucy Bence who live in N.S.W. if anybody knows them id really appreciate being able to contact Leonie ASAP. Im also looking forward to hearing from other parents who have children with CS, so please e-mail me & let the links begin! Also who has been to a CS semenar B4' as id love to know what it was like??? Kind Regards To All. Diane & Tahla. | 25 May 2009 05:06am Queensland, Australia. |
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Debbie Taylor |
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| My son Charlie passed away 31st march 09 at 19 weeks old,the cause of his death is unknown and a inquest is ongoing at the moment,Genetics became involved mid march whilst on the cardio unit at Leeds.We went to a appointment last friday and were told that he could have costello syndrome and are waiting for one more test result to come back.After looking at your web site I do believe that he has CS,and would liked to know how he would have grown up.please contact me pixie1974@hotmail.co.uk | 29 April 2009 08:34pm Huddersfield west yorks England |
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jeff merrill |
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| My son john is 20 years old and has been suffering from severe cluster headaches, is anybody else out there having this problem? | 24 February 2009 00:30am chicago illinois |
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Kelly Wetzstein |
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| My daughter Lalani is 7 months old and was diagnosed with CS when she was 4 months. She has a feeding tube but other than that seems to be doing great. I would love to hear from others who are interested in sharing their experiences and knowledge about CS. Please feel free to contact me at me email address. kelly_bohn@hotmail.com
Thank you! | 19 February 2009 00:53am Fargo North Dakota |
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Esmeralda Martins |
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| Hello.
I have a son with costello syndrome, whose 5 years old, and he is like an one year old baby. He does not walk or eat, or even speaks. And I dont know what else I can do to help him. Please, if someone could talk to me and give me some advices or answers , about when they start to eat, to walk, and all those things, please, contact me for my email : esmeralda.martinz@hotmail.com.
Thanks | 26 December 2008 03:57pm Portugal |
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Andrea |
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| Hallo,
wir haben eine Tochter,Lenya,sie ist fast drei Jahre und hat das Costello Syndrom.Wir suchen Kontakt zu anderen deutschsprachigen Betroffenen. | 21 December 2008 09:38pm Deutschland,Niedersachsen |
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anahita avalos |
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| Hola Claudia, somos una pareja de Tabasco México, nosotros tenemos un niño con sindrome de Costello que se llama Ulysses y nos daría mucho gusto poder intercambiar opiniones y experiencias con ustedes. Puedes contactarnos en las siguientes direcciones: avalos32@hotmail.com y anahita32@hotmail.com Saludos Sergio y Anahita | 4 December 2008 05:30am mexico |
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Erin |
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| metformin metformin https://xwiki.iptp.net:8443/xwiki/bin/download/XWi
ki/MattBriggs/met.html | 28 November 2008 06:37am Erin |
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Claudia Garcia |
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| hola! tengo una hija de 7 anos con este diagnostico, agradeceria me escribieran para compartir informacion | 9 November 2008 06:29am Guadalajara, Jalisco. |
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erika |
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| hola mi nombre es erika diaz ya antes habia dejado un mensaje aki y quisiera saber si puedo contactar a alguin via telefonica para saber mas sobre este sindrome ya que tengo un hijo de 5 yrs old con este sindrome. Hello my name is erika diaz and y have a child with CS if some people wants to talk with me by phone or email my ph 2546879987 thanksssss | 23 October 2008 11:30pm itasca texas |
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Brian |
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| This is a fantastic site; I am blessed to have a child in my special education class that I work with who has Costello's. Fantastic resource for absolutely special children. | 20 October 2008 04:50am New York, NY |
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Betty |
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| Hello i have a daughter who is four and she has costello syndrome. She is going to start kindergarden next year and i'm really nervous about it. i really don't know what to expect. | 16 September 2008 08:43pm Fort. lauderdale, Fl |
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Nancy |
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| I am checking out the website, due to the mention by the geneticist of this being a possible diagnosis for my 14-year-old son, Damien. We have investigated so many storage diseases that up until this year, I had gotten tired of looking and just focused on his many needs, as well as the needs of my other children. We'll see!
| 21 August 2008 04:02pm Wellington, Florida |
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Christina Smith |
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| This site has been a wealth of help to our family. Our daughter's geneticists say that they believe she has this syndrome, but they cannot test because the genetic testing for Costello is unreliable. Thanks for the update in genetic testing! | 18 August 2008 01:54pm North Carolina, USA |
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chantal leblanc |
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| bonjour! ma fille malie qui à 3 ans à le cs... ma plus grande préocupation est de savoir quand elle va manger... elle est gavée et nous avons trés hâte qu'elle mange | 15 August 2008 01:56am québec, canada |
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Susan Schaeffer |
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| Josephina,
I am the mom of Matt, who is 19 years old and has CS. I don't usually go the the CostelloKids website, but just happened to be browsing today. I am right across the bridge from you in Cinnaminson, NJ. I would love to talk to you. I you'd like, give me a call at my home phone (856) 829-1312. If I am not at home, leave me your number.
Take care,
Susan | 4 August 2008 04:58pm Cinnaminson, NJ |
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josephina |
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| hello everyone my son is khalil and he 2 months old and has cs Iam having a hard time dealing and understanding cs please i would like to talk to people who have children with cs for support and info.thank you | 28 July 2008 11:23pm philadelphia pa |
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webmaster |
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| Hello and welcome to the CostelloKids Guestbook.
Due to a technical problem the Guestbook has not worked correctly for the past few months. We are sorry for any problems that may have caused you in posting your messages. The problem has now been fixed, and we look forward to reading your messages.
Take care | 14 July 2008 01:43am Manchester England |
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Karrin Brooks |
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| Hi my son, whom is now three has undergone test after test since birth we are now to met with a genetist for a second time at which I am going to question costellos syndrome. Our meeting is next week and I would love to talk to any NZers prior to this meeting with other ideas for questions to ask. I can be contacted at mardimus@o
rcon.co.nz
| 8 May 2007 03:38am New Zealand |
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Dario, Caroline und Paolo Fava |
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| Hallo an alle, Dario geht es Wunderbar (erste Fall in der Schweiz.
Wir freuen uns auf Informationen! | 2 May 2007 05:02pm Buchrain, Luzern, Switzerland |
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Kimberly |
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| WOW!! I just learned of Costello's syndrome also, through a biology project! These children are AMazing! and I hope you can see the Powerpoint
! theirs a page for this website! thanks for all the help, Costello Kids are in my prayers! God Bless | 27 April 2007 06:35am U.S |
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anoynomous |
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| are there any charitable organizati
ons for costello research? | 26 April 2007 02:42pm pennsylvania |
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Pepper |
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| Just wanted to let everyone know that Jaylon is doing well. He is doing great in school and the whole school loves him. We are still planning on attending the conference
. Hope to see ya'll there. | 10 April 2007 00:15am TEXAS |
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Samantha |
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| To Betty: We live in Tallahasse
e, FL. Our son is now nearly six and was diagnosed with CS about two years ago. You can contact me at sdellosso@
gmail.com.
| 3 April 2007 07:45pm |
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