Hi. Just found this group... My 3 yr old son has hemifacial microsomia and a repaired cleft lip. He was just diagnosed a few weeks ago; we adopted him from...
Hi Karen, Welcome aboard. I am not familiar with HFM, but we have people here who mostly have Crouzons syndrome, and some who have the cleft palate problem. ...
John Dossey
jdossey@...
Dec 19, 2003 2:03 pm
1060
Dear Karen, My name is Gisela Dossey, born in Puerto Rico, but like my husband John, I was born with Crouzon's disease. I'm familiar with hemifacial...
Dear Karen, Glad I could help. Please feel free to ask questions and if you need a parent of a child with Hemifacial Microsomia to network with, please let me ...
Gisela Dossey
giseladossey@...
Dec 21, 2003 10:45 pm
1063
hi karen... i am writing to you from south africa. my name is kelly. my daughter is 3 years old and was born with unilateral microtia and atresia. does your...
Dear Kelly, Network is the most wonderful thing. Stitches is a small group to help, support but most of all to network people in order for them to get the...
Gisela Dossey
giseladossey@...
Dec 22, 2003 3:29 pm
1065
thanks gisela... wishing all our members (who celebrate christmas)a specialtime a very happy and healthy new year. regards, kelly south africa ... From: Gisela...
Hi Kelly. Thx for the info; i'll check that group out as well. Our son doesn't have microtia. His ears are actually quite prominent (stick out). We've only had...
Dear Karen, My husband's daughter Sandy even though she was born with Crouzon's syndrome and not Hemifacial microsomia, was born without an eardrum on one ear...
Gisela Dossey
giseladossey@...
Dec 23, 2003 10:45 pm
1068
hi karen... thanks for the reply. have you not had a cat scan? that is the only way you will actually know if there are any internal abnormalities - and once...
Not yet. He had an initial evaluation in Dec, and the CT won't happen until sometime in Jan. Thx for the other list suggestion... just joined. K. ... actually...
hi paula... my name is kelly, and i am from cape town, south africa. i joined this group quite a while back, but very seldom do i receive any mail. i just...
Hi Paula and Kelly, I think we all get any e-mails from this group, but for a long time the group was pretty static. No one wrote anything. But there are some...
John Dossey
jdossey@...
Mar 11, 2004 1:55 am
1073
Hi Paula & Kelly, My name is Gisela Dossey. My husband John & I respond to any inquiry posted on this group. We both have Crouzon's syndrome and live in...
Gisela Dossey
giseladossey@...
Mar 11, 2004 2:37 am
1074
So glad to see others here, my husband and I finished our Foster/adoptioin classes, and we are wanting to adopt a little girl who has Aperts. Shes in another...
I just signed up for this group, but it doesn't look very active. I have a son, he will be 2 in July. He has had 3 surgeries and is now getting set up for a...
hi jen... my name is kelly, and i am writing from cape town, south africa. i am not a very active member on this group, as i belong to a more "specifically...
I am currently living in Monticello, Minnesota. My son was born with Crouzon's. He has had 2 cranial remodeling surgeries to open his skull for brain ...
Hi Jen, My name is Steph and I am not very active in the group. I mostly just read the post that come through. I read your post yesterday and have been...
Ed Chapman
elchap@...
May 6, 2004 4:00 am
1079
Hi, I am updating on Gavin. He had his adenoids removed yesterday and tubes put into his ears. While in surgery they found his throat and larynx to be ...
Hello, My name is Michele and I am a 36 year old female who was born with crouzons. No one in my family has crouzons, actually I have never seen, spoken to, or...
Michele, Your story inspries me because I have a daughter your same age who also has crouzons, had surgery and it really did change her life. I am sooooo old ...
John Dossey
jdossey@...
May 8, 2004 11:35 am
1082
Dear Michele, My name is Gisela Dossey (yes, John Dossey is my husband) and I like you was born with Crouzon's. Nobody in my family had it, so I was the first...
Gisela Dossey
giseladossey@...
May 10, 2004 11:07 am
1083
I was really far into debt. Like Most I was in Financial dispair. I could not seem to get ahead no matter how hard I tried. Untill I found this place. ...
Hello, my name is Mayumi Gaines. My 18 months old son, Allen, was born with Crouzon Syndrome. We are currently located in Japan but will go back to the states...
Dear Mayumi, Welcome to our support group! My name is Gisela Dossey. I'm 39 yrs old, born with Crouzon's Syndrome and had it corrected when I was 20 years old....
Gisela Dossey
giseladossey@...
Sep 3, 2004 11:16 am
1086
Hello Mayumi, Welcome to our group. I am the husband of Gisela Dossey. We live in Cincinnati, Ohio and it would be a pleasure to meet you when you come to...
