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Written by Anders Hildeng Naess on Apr. 19, 2017
Hi we just learned that Our daughter has Baraitser Winter - she is 7 years old. Do you know if there is any network for parents ?
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Written by Jessica on Oct. 4, 2016
Hey everyone,
My family and I live in Metairie Louisiana (close proximity to New Orleans). Our daughter Olivia (3 yrs.) was just diagnosed with BW Syndrome. We have many questions of course, but one for now. Does anyone have children who were born after your child with BW? We would like to have one more baby, but I have to say that I'm pretty nervous now.
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Written by Heather on Oct. 2, 2016
Hi i am also very interested in your life journey as my son also has mutations in his actin gene. We are from Saskatchewan,Canada.
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Written by Yvonne Thomas on May. 5, 2016
Thank you for sharing your expirience in this blog. I share one myself. My now 11 year old daughter was diagnosed 2 years ago with BWS. We live in the Sacramento area of California. This a trial and error period with the seizures.
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Written by Cheri on Apr. 20, 2016
Hi, my name is Cheri and I have a grandson who was recently diagnosed. We know little to nothing about this syndrome, or what to expect other than the brief overview from the doctor. We live in Southern Indiana, USA. Do any of your children have digestive issues?
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Written by Shelley on Mar. 14, 2016
Hi there, my name is Shelley & I live in England. my son, who is 6, has today been diagnosed with Baraitser-Winter. Firstly, thank you so much for this blog, a real people perspective 😀
Is there anyone out there, who has this syndrome but to a lesser degree? My son doesn't seem to bad, can I expect him to get worse? Have to say, I'm a bit confused, so any information would be greatly received. Many thanks xxx
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Written by Jack on Jan. 22, 2016
Hi my name is Jack and my daughter is 12 and we just got the diagnoses of Baraitser-Winter.Wow not sure what to think is anyone from the US on here looking for some info
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Written by Emma on Nov. 26, 2015
My name is Emma and my daughter was diagnosed with Winter Baraitser in September. She is 3. I live in England. If anyone wants to get in contact you're very welcome to
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Written by Amber on Nov. 18, 2015
My son Myles got diagnosed yesterday with it he is 15months old he had cranial surgery at 12 months and is now crawling if any of you mother's with a child that's has bws feel free to email me amber.Hambleton93@gmail
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Written by Clare Ettensohn on Oct. 19, 2015
Hello Yvonne & family,
Thank you so much for your blog. My name is Clare and my husband's name is Conrad and our daughter was just diagnosed with Baraitser Winter Syndrome today. We live in Seattle, WA and my husband and I are looking for information, support and community.
Our daughter will be 3 in November and she is the light of our lives! She is so social and outgoing...and like Erin LOVES music! We found your blog and we would like to connect with you and others. I also sent you a facebook message. Please send me an email when you are able. Thank you!

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Written by Beyhan DÖNMEZ on Sep. 21, 2015
MerhabaYvonne Schunk
Ben Türkiyeden Boran'ın annesiyim ingilizce bilmediğim için Türkçe yazıyorum .
Daha önce facebooktan yazmıştım burdan da hala seni takip ettiğimi bilmeni istedim. Erin'ı çok iyi gördüm Boran 2014 nisan ayından beri nöbetleri ilaç değişimi ile durdu bu bilgiyi sana iletmek istedim sizlere sevgilerimizi gönderiyoruz
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Written by Arthur Leach on Sep. 15, 2015
Hello Yvonne and fam,
My name is Arthur leach and I have a 13 year old little sister who has BWS. Olivias' story is very much like yours. She even looks like erin... ALOT! I have alot of regrets on how I raised my little sister and have questions on how you guys handled Erin. Our home life was a long nasty road for a bit. I would much like to hear from you guys. I think it would much help my conscious.
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Written by Arij Everaarts on Aug. 17, 2015
Dear family,
we have a daughter recently diagnosed with BWS. We would like to get in contact with you by email.
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Written by Marta Sandei Marcon on May. 5, 2015
Olá!!!Me identifiquei com sua história tenho um filho de 9 anos,Murilo,e depois de muitas pesquisas geneticas sua geneticista pediu o exame para saber se meu filho tem sindrome de Baraitser-Winter,não consegui fazer ainda,e não soube de nenhum caso aqui no Brasil,por isso procuro saber mais pela internet.Parabéns pela família linda!!!
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Written by Bryan on Mar. 31, 2015
After 5 years since his birth, our geneticist finally found a mutation in my son's ACTB gene. I just received word today, and am in shock. I am trying to find information about BWS on the web, but little is available. I would love the opportunity to speak to one of you to learn more about the diagnosis and what my wife and I can expect in the coming years.

Any help would be greatly appreciated.

thanks!
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