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Williams Syndrome - guestbook
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| Name: Kylie From: Blundeston E-mail: kyliejade@ymail.com |
Hi my daughter is now 3years old and has recently started displaying some really bad temper tantrums (hitting herself in the head etc), everyone has just said its due to frustration and shes attenchion seeking but no one has gave me any advice on how to stop it. Has anyone else had these problems? Please email me
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| Name: dawn coleman From: england E-mail: livewire83@live.co.uk |
Hello, my 7month old daughter has all the facial significations of williams and has to have a heart scan soon for a possible hole in her heart, she has only slept throught the night a handful of times since birth and she was very colicy!she has a very wide nasal bridge and puffy eyes a small chin infact her face is identical to most of the pictures i have seen and the doctor says she has epicantal folds. i want to get her tested for williams asap. i was interested to see if other people with children with williams can tell me if my daughter may have this just by my description? thankyou!
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| Name: Paula Lockwood From: Ipswich, suffolk E-mail: kangarooj@ntlworld.com |
Hi, have recently found out our 19months old son has WS and was looking for advice or someone to chat to about it. Many thanks
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| Name: danielle hedley From: leeds E-mail: dhedley@live.com |
hi there my little gril ruby is 8 months and she has williams sydrome she has open heart surg 2 times and has bad feeding problems so bad she has a ng tube because she wont eat or drink herself she on sleeping med as she never sleeps she has low musle tone and dev delays .she also has refulx is there anybody whos havein same problems .
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| Name: stacey From: lancashire E-mail: stacey1985_63@hotmail.com |
hello my cousins new born has just been diagnosed with ws, she is really up set as she has not really been told much about it, i will be telling her to go to this web site as i think every thing she needs to no will be on this site, you all do a brill job and i thiank you for the help and support you offer to people with and who no people with children with ws.
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| Name: Ed Kirkner From: Hungary E-mail: kirkners0@t-online.hu |
Hello,My wife and I will be foster parents to a child with Williams Syndrone. We just found out about it today. We know nothing about it or what we need to so we will know how to help him cope with the world. He has been in an orphanage all of his life, he is 9 years old and looks about 6 years old, small hands and feet, slanted eyes, does not like music but love to work with lego's and is loving, rocks himself to sleep at night, he rocks so hard that he is all over the bed and eventually goes to sleep is there help for him and for us to learn about this illness he has. Sincerely your Ed and Vali Kirkner
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| Name: Shell From: Oxfordshire E-mail: shellion@ntlworld.com |
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| Name: Dana bihn From: Ohio E-mail: Danab2589@hotmail.com |
Hey every one my name is Dana I have willis sindrum I gust trend 20 on the 5th of febuwarey I live in Ohio I have 2sisters and one brother I have 2cats I gust graduwted from clay hi school I have a triend her name is Sam I love her a lot I have a mom and dad but they are not mared no more school was not ezey on me the kids at school wold call me names and stuff it was not good at all Admin reply: Hi Caroline
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| Name: caroline robson From: brdlington E-mail: robson641@btinternet.com |
hi everyone i have a daughter who is 23years old who has ws when she was a baby ws was unknow or had no name we have been through all schooling systems from main stream to mild learnig difficulties to speacail needs schooling i dont want to upset anyone with younger children but in my daughters case she has very server learning difficulties and is unable to read or write can only follow very simple instuctions and needs someone wtih her 24/7 she has to be be helped with all aspects of personell hygine and bathing she requires her food to cut up and is unfortunatly deterating in health, however she is a very hapy soul most of the time and all of us can have her off days!!! she displays nearly all the syemptons of ws and can still jpresent challenging behaviour, but she can also light a room up with her personality and laugh. I think perhaps the saddest thing is though that she sees of her age having a full life wtih a partner, going, going to the pub having children and is aware that she can not do these things after all she is 23 and has the same urges as everone else and still fancis a good looking bloke. The best we can do is give her a full a life as is possible doing the things she enjoys good luck to all of you out there with children with ws and dont forget if you have other children it affects there lives too.
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| Name: angela preston From: leicester E-mail: prestonangie@btinternet.com |
Hi to everyone, I have a son Kieran age 15 with williams syndrome, he is a great boy that brings love and joy to all that meet him, he can also be very abrupt and rude at times but does so in such a way that you cant help having a quiet snigger. All the best to other parent's with w/s children we are all special too! Angie xx
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