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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 ?
Oct. 4, 2016
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.
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.
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.
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
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
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
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
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
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!
Beyhan DÖNMEZ on
Sep. 21, 2015
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
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.
Arij Everaarts on
Aug. 17, 2015
we have a daughter recently diagnosed with BWS. We would like to get in contact with you by email.
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!!!
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.