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Use the mouse to move me!!
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Written by
chelsea Asbury on
Aug. 23, 2013
Helo everyone my son callum has this syndrome he's is 5 Dec 1st we liven in England and would love meat and get more info x bless x all the kids
Written by
Cindy Mels on
Aug. 4, 2013
Thank you so much for letting me glimpse through the window of your world. Your words are so eloquently put together. I feel like I am sitting right beside you and partaking in your journey. I especially loved your "mimbit" story and had to wipe the tears
from my eyes. Thanks for sharing. Your family is truly an inspiration and a blessing.
Written by
BillRosie Cromer-Brodie's Grands on
Jun. 30, 2013
Will be thinking and praying for Erin and all of you on July 3rd. Know this is a new journey you are taking and hoping only the best for Erin. Thank you for sharing this with all of us. Please keep us posted on her adjustment to this new area of her life.
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!
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