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Written by
Paula on
May. 19, 2013
Hi, my Grand daughter Jade has recently been diagnosed with Baraitser-Winter syndrome and your story could have been hers. She turned 15 in January 2013 and has started High School, here in New Zealand. She also loves music and horses. She has high frequency
hearing loss and various other conditions, some related some not. thank you for sharing your story
Written by
Patrick on
Mar. 20, 2013
Bonjour à Votre Belle Famille,
Votre histoire est la notre. Maëlle va avoir 14 ans, le syndrome de Baraitser winter a été diognostiqué il y a 4 ans. Suite à une recherche génétique, Maëlle a le chromosome 1 abimé. Si elle a toujours eut du mal à s'endormir,
aujourd'hui, elle ne dort plus, elle est si exité. Comment avez vous géré les nuit Erine ? avez vous un traitement médical pour qu'elle s'endorme ? Nos médecins ne trouve rien qui ne "fonctionne" vraiment ...Il y a beaucoup de ressemblence physique entre Erine
et Maëlle ... deux belles filles qui nous donnent tant d'amour.
Bien à vous.
Patrick
(Chambéry FRANCE)
Written by
Kevin on
Mar. 15, 2013
Hi Yvonne. I am an audiology student from Hong Kong who just randomly encountered this site when finding information about Baraitser-Winter syndrome for my assignment...really moved when reading all the hardship you have gone through.
Thank you so
much for sharing Erin's story. Erin already has the best gift in the world--a wonderful mom like you!
Written by
Odalis Pando on
Mar. 15, 2013
hi, I just found this blog and I think it's wonderful that I came across it! My daughter has this syndrome she just turned 1 march 10th.... We are from Oklahoma city and she is the only one that has this syndrome here in the state! I would like to hear
from you! Thank you for your blog! Odalis_pando@yahoo.com
Written by
Lisa Leach-Peterson on
Feb. 27, 2013
My daughter, Sarah Moore, just told me about your blog! My youngest daughter, Olivia has this syndrome. She was right, our stories are almost identical. Thank you so much for sharing your story! I would love to hear from you.
Written by
Sarah Moore on
Feb. 26, 2013
My little sister Olivia has Baraitser Winter Syndrome! She is 12! I cannot believe I just came upon your blog. I would love hearing from you. My family is going to be so excited about Erin and her beautiful story! Erin's story and Olivia's story are so
extremely similar. Keeping Erin and your family in my prayers. Hope to hear back from you soon.
Written by
BillRosie Cromer-Brodie's Grands on
Feb. 16, 2013
Just checking on Erin and praying everything is going well for all of you.
Written by
Alayne Burge on
Nov. 4, 2012
Just stopping by to say Thanks again for this awesome blog! Brodie loves 'talking' with Erin. (He just chats with her pictures on here! LOL) Hope we connect with MANY more through your dedication and love for Erin.
Written by
Tricia on
Nov. 4, 2012
Hi, our daughter is 7 and was just diagnosed with baraitser-winter syndrome @ the national institute of health. I would love to connect w/ you. tbgross1@sbcglobal.net
Tricia Gross
Written by
Chris on
Oct. 24, 2012
My cousin's son was diagnosed with BARAITSER WINTER SYNDROME in Virginia this week. He is a twin. My cousin is online a lot and not familiar with anyone with this illness either.
Written by
Jennifer on
Oct. 14, 2012
Hi! Thank you for sharing Erin's story. I am trying to reach Dr. Dobyn's and just left a message with hopefully the right place. I believe my almost 5 year old Brandon may also have Baraitser-Winters syndrome. He has always been small, has coloboma of
the irises, ptosis of his eyelids and has also just started falling to the floor. My husband is always in denial and does not want to do further testing but I feel as though we need to know. My son is very intelligent and is in Child Development (preschool)
but I have noticed some behavior issues mostly towards my husband. We also have three other sons with no issues. Sorry for the rambling and hope to hear from you and Dr. Dobyn's. Thank you, Jennifer
Written by
Bronwyn Riddoch on
Oct. 9, 2012
Thank-you for sharing so much information about Erin. I learned things that I didn't know before. Erin is very special to me and a bright spot in my day at school!
Written by
Scott & Julie Morgan on
Sep. 9, 2012
Hi Yvonne, this is awesome. You've an incredible job. Erin is an incredible young lady and it's an honour to to know her and spend time around her at school. You have a incredible family that has accomplished so much.
Erin is an inspiration and a
conduit to be accepting and loving.
My wife and I look forward to reading more as time goes by.
Written by
Linda Dietrich on
Sep. 8, 2012
I had the good fortune to meet Erin at the Paris Fair. She draws you to her, she has such a gentle spirit and I felt privileged to have met her. I was particularly touched when she gave me a hug when she left. I love your blog and look forward to reading
more!
Written by
Courtney Kay on
Sep. 8, 2012
Yvonne, this is such a touching tribute to Erin and your family. Brent and I have been truly blessed to have the "Schunks" in our lives. I see only good things coming of this and am so excited to begin sharing this blog with the many lives I have had the
pleasure of introducing our munchkin too :) xoxo
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