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harsha nandwani |
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| hi,my child was diagnosed with cs when he was 4 yrs every time i see him i feel he needs attention but to be very frank i dont really understnd how to help him my majour concern is his height and his education a basic education he is going to a normal school but his getting hard for him to cope upwht would u advice regarding his basic education and his height doesnt seem to be growing normally he is 8yrs old now but looks like a3yr old child pls do help me with a information on his education as i am staying in united arab emirates(dubai)and here i havent seen any school for children where they can help him he is very smart once if he gets thing he gets it forever but intially its very hard for the teacher to get him explained he is a slow learner i had even been to a child sciologist where she told me tht he is a better then other children its just tht he needs extra attention but here in this place its very hrd to find schools where he can get this help. | 12 February 2010 10:18pm united arab emirates |
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VERONICA |
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| El aparato de VITALSTIM , ayuda a los niños con sínd, de costello, ya que he leido que el transtorno genético, afecta sus músculos, entre éllos los de la deglución, al ser prederteminado genéticamente, ¿le es útil el VITALSTIM?. | 6 February 2010 05:06am GUADALAJARA, JALISCO, MEXICO. |
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Verónica |
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| Hola,mi hija Ma Valentina de 1a8m, le han dx clinicamnt SC, pesa 7 kg, se le alimenta por gastrostomia, aún algs médicos dudan del dx, ¿en México, hacen el examen lab H-ras?, un médico me ha indicado pasarle en la leche aceite de maíz y miel karo, día y noches. ¡¿ALGUIEN ME PUEDE AYUDAR?!
| 6 February 2010 04:34am GUADALAJARA, JALISCO, MEXICO. |
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Margaret |
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| Morning Diane and Tahla,
I would love to get in touch with you ASAP regarding an Australian Gathering. Please contact me via the contact form of the Web site. Alternatively, the email address you have for me is still valid. Regards, Margaret | 17 January 2010 10:23pm Australia |
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Annelise Larsen |
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| I first learned about CS in a biology class three years ago...and ever since then I have loved reading the stories and looking at the photos as these beautiful children are growing up. I pray that you all have a very Merry Christmas, and thank you for this opportunity to see how God is working within all these childrens' lives. Merry Christmas!! | 14 December 2009 11:22pm New York |
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Jennie Roberts |
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| Thank you so much. I now have a name for the syndrome that my grandson has.He's 3 and an absolute angel. | 3 November 2009 09:46pm Oklahoma City,Ok. |
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WEBMASTER |
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| Dear Visitors
Thank you for your messages.. If anybody has contacted me please be patient. The website mail system was hacked, which resulted in messages sent through the contact us section not being sent.
I am in the process of setting up a new contact system at the moment. Once this is done I will check through the server logs, see who has contacted me, and get back to you.
If you need a quick reply a new contact system will be available within the next 24 hours.
In the mean time thank you all for visiting our website
Kind regards
colin | 18 September 2009 02:45pm Manchester |
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Cherie |
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| Just wanted to thank you for this site, My little niece was born with Cs and she is the most precious thing to all of us.Not alot is know here in Canada about CS,so it has been a very difficult time to see her go through what she does.Thank you for all the information you put on this site. She is the most amazing little Angel in our lives. | 17 September 2009 10:19pm Ladysmith,British Columbia,Canada |
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Jennifer Belmar |
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| Hello, My name is Jennifer Belmar and I am a speech pathology Master's student at Southeast Missouri University. I was inquiring about information because I am doing my thesis on two adolescents with Costello syndrome. Does anyone know of any specific studies on communication aspects of people with CS. THe majority of the research I found is focused on the physical characteristics and genetic components. Your help would be greatly appreciated. Thanks! | 8 September 2009 07:21pm Missouri, United States |
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cristiane |
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| minha filha tem agora 2 anos,2 anos de muita luta e superação, gosta de mais informações e certeza de que e realmente costello que meu anjo tem. obrigada | 24 August 2009 05:36pm brasil |
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Jessica (Douubletree Hotel Berkeley CA) |
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| I am a front desk agent for the hotel where Mr. & Ms. Stone are currently holding one of their support group meetings. I was not familure with the Costello Syndrome until the Stone family arrived at my hotel. I just wanted to tip my hats to them because I have never seen a couple with bigger smiles on 24/7. I appreciate how they always have positive spirits and uplift not only the parents and children involved in the organization but every one around them! Keep up the good work and may God bless you to continue to encourage the lives of the children with CS and their families! | 3 August 2009 05:51am San Pablo CA |
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inoiioi |
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| what is genetic disease | 23 July 2009 01:43pm germany |
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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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