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Written by
theodor frank klann on
Jan. 27, 2019
hi david as we had previously discussed, i have asthma, prostate cancer and alergies to certain chemicals frank
Written by
Kat on
Jan. 26, 2019
Thank you for sharing your story. It’s so helpful. My friend’s child has this syndrome and I am trying to educate myself on this topic so I can be more aware. I wanted to get his teenage son (13/14 yrs old) a gift but I don’t know what to get him. You
mentioned there are varying degrees with intectual development so I’m not sure what would be appropriate. Any suggestions would be greatly appreciated.
Thank you,
Kat
Written by
Jeff Greenwood on
Jan. 24, 2019
Hey everyone! Thanks for sharing your story, it's heartwarming. My daughter is a 1 year old who was just diagnosed with BWS at Boston Children's Hospital (Boston, MA). Our doctors have been incredible, and our geneticist has two other patients with BWS.
My wife and I live near Worcester, MA with our daughter and her 2 year old brother. We are just beginning our journey with BWS and would be happy to connect with others, especially those in the area!
Written by
michele tyler on
Jun. 25, 2018
Read your blog and Erin story so closely resembles my son Jonathans story. He was recently diagnosed with this syndrome after 31 years of searching what fits him best. Its a journey that changes daily.
Written by
Emma Cook on
May. 27, 2018
Hi my name is Emma and my son was diagnosed with BWS in February 2018. He is 11 months old.
We are from Melbourne Australia.
Feel free to get in touch
theorrocks@gmail.com or Facebook emma cook (might be tricky as there are lots of us)
Written by
Verity on
May. 1, 2018
Hi everyone,
We received our sons diagnosis of Baraitser-Winter Syndrome on Monday (two days ago). He is only 18 minths old and has been under genetic investigation since birth given his multiple medical conditions and appearance. We live in Sydney,
Australia and i'm wondering if anyone reading this is also from Australia. We would love to connect with other families from all over with regards to Baraitser-Winter Syndrome as the info we, and our geneticist, have found is very limited.
Thanks
Verity
Written by
Katharine on
Mar. 7, 2018
Is anyone from Germany with a children with BWS? We got the diagnostic yesterday. Please contact me
Written by
Tracey Rose on
Dec. 12, 2017
Hi our daughter Ava was just diagnosed today with BWS 12/14/17. She will b 9 yrs old next month. We would love to connect with some others dealing with this. We live in Mercer, PA about an hr north of Pittsburgh.
Written by
patricia self on
Oct. 30, 2017
My son Eldon was just diagnosed with BWS 2 weeks ago. He has been tested his whole life so to find an answer for half of what is wrong with him was huge to us. I would love to hear from anyone else that is facing this diagnosis as I can't find much info
on it and his doctor that ordered the testing that lead to his diagnosis is not very familiar with it either. I am so confused by it all right now. My email is selfpatricia@aol.com and my facebook is patricia self or puzzled miracles
Written by
Heidi on
Aug. 22, 2017
Hello my friends,
My beautiful 11 year old daughter was diagnosed with BWS last Thursday. It is such a relief to finally know. My husband and I have searched for years. She fits the descriptions precisely. I would love to talk with anyone who is dealing
with this. Please feel free to reach out to me. My name is Heidi. You can contact me at heidiruedinger@hotmail.com.
Written by
Steph Dewis on
Aug. 20, 2017
Hello all.
My middle child, Lily (06/02/14), was diagnosed with pachygyria and polymicrogyria at 15 months old. We are currently going through genetics as ts believed that BWS is the cause if this! It's so nice to read similar stories with these conditions
being so rare! Lily is very delayed. She too has hearing loss. She has a lot of respiratory problems and other health conditions that I won't bore you with right now however if you would like to connect with us ill add lilys facebook group which is "lilys
fight against pachygyria and polymicrogyria" at the bottom :) best wishes to you all x
Written by
Tashia Stevenson on
Jul. 31, 2017
Hello Everyone,
First thank you for this blog. My son (3yrs) was recently diagnosed with BWS. We are in the trial and error stages with controlling his seizures. I would love to connect with other parents of children wit BWS. We have had our child
in so many therapy programs, I would love to here from other parents on things you have tried to maximize your child potential with this syndrome.
Written by
Tanis on
Jun. 9, 2017
Hi,
I was happy to read your blog! My younger daughter was confirmed baraister winter last fall. She has done well, but is quite delayed. Im wondering if you would share about the siesures your daughter endures. Ours has migraines but has had an instance
of what i think was a drop seisure. Would appreciate any thing you would be able share. Thank you for your time
Written by
Joel Kling on
Apr. 19, 2017
Hello all,
We live in Woodland CA, (near Sacramento). We have a nine year old son who was diagnosed with BW about a year and a half ago. So many question, thus I'm certainly looking for a network of others living with BW to help us better understand
our son's condition. Any information is greatly appreciated. My best to you all.
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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