Amie's Guestbook
Total: 243 guests

Name: Dana Rodgers
Website:
Referred by: Just Surfed On In
From: Howell, Michigan
Time: 1998-12-11 03:49:14
Comments: PRIVATE MESSAGE
Name: suzanne joseph
Website:
Referred by: Net Search
From: Sharpsville, PA
Time: 1998-12-11 02:03:35
Comments: Thank you for being a strong person. It is people like you that give others with genetic disorders strength.
Name: Bridget Romero
Website:
Referred by: Yahoo!
From: Louisiana
Time: 1998-12-07 21:51:59
Comments: I think your story is very special. You are a very beautiful person. I admire you dearly. Love, Bridget :-)
Name: geoffrey metz
Website:
Referred by: Just Surfed On In
From:
Time: 1998-12-06 23:50:37
Comments: PRIVATE MESSAGE
Name: traci cremeans
Website:
Referred by: From a Friend
From: walkertown, n.c
Time: 1998-12-05 01:37:37
Comments: PRIVATE MESSAGE
Name: Linda Breuckman
Website:
Referred by: Just Surfed On In
From: columbus WI
Time: 1998-12-05 00:57:15
Comments: PRIVATE MESSAGE
Name: Robert E. Valett
Website:
Referred by: Just Surfed On In
From: Fresno, California
Time: 1998-12-05 00:56:02
Comments: I am glad you quoted me on your page ("The human heart feels what the eyes cannot see and knows what the mind cannot understand"). You may also be interested in reading my newest book SPIRITUAL GUIDES TO HOLISTIC HEALTH AND HAPPINESS available online through either Barnes and Noble or Amazon. Best wishes! Robert E. Valett
Name: Amanda
Website:
Referred by: Yahoo!
From: Univ. of KS
Time: 1998-12-03 01:56:00
Comments: Thank You. I think your page is very informative and friendly. It happens that I am doing a paper on genetic disorders and I found this page.. I learned a lot and i just wanted to say thank you. Sincerely, Amanda Danser
Name: Natasha Cancino
Website:
Referred by: Net Search
From: Minnesota
Time: 1998-12-03 01:38:42
Comments: I learned recently about Treacher Collins from a book that I picked up at the library and was interesting in getting to know some people that had it. I think that you have a beautiful soul, I'm glad that you can be so positive, and I'm sorry for all the bad things that you had to endure. Good luck in the future.
Name: Louise in Pittsburgh
Website:
Referred by: Just Surfed On In
From:
Time: 1998-12-03 01:34:58
Comments: A note from someone you touched via your homepage... I was looking up information and came upon your page. Your are inspirational! I admire your spirit and fortitude. The world is surely a better place because you were born. Glad I found your page.
Name: Jenn Clow
Website:
Referred by: Just Surfed On In
From: Ontario, Canada
Time: 1998-12-02 04:08:59
Comments: Hi, I have recently met a guy on the net who lives in the same province as I do, and we have become very close. It took him a while to tell me that he had treacher collins syndrome, but I was glad when he did because it shows that he trusts me and is trying to open up to me. Which makes me think that i am open minded and kind hearted He never really told me exactly what it was so I thought that i would find out on my own, and I found that your home page has been very informative. Thank you very much. I commend you for being brave and sticking up for yourself and not wallowing in self pitty because of how you look, because it is how you show yourself to everyone and how you feel about yourself. Good luck in the future. Your friend Jenn
Name: Lisa Pleasants
Website:
Referred by: Just Surfed On In
From: Gainesville, FL
Time: 1998-11-25 08:36:24
Comments: Amie, I just sent you email.My daughter has TCS.
Name: Beckie Mireles
Website:
Referred by: Just Surfed On In
From: Texas
Time: 1998-11-25 03:22:00
Comments: PRIVATE MESSAGE
Name: Brian Collins
Website:
Referred by: Just Surfed On In
From: West Point, NY (United States Military Academy)
Time: 1998-11-24 06:14:43
Comments: Amie, Being from such a party school , we rarely do much on weekends other than do homework, work out and surf the net. For no apparent reason, I typed in my own name to a search engine and ended up at your site. I read a little about you and moved on. That was Saturday night. Somehow, your interesting story stuck with me. I felt the need to send you a little message to express my gratitude. You really are an interesting person. I just wanted to let you know that your page and your biography are reaching people who would otherwise know nothing about you or your condition. I suppose that this is what the inventors of the web intended when they put the global system into effect. Just saying hi, Collins
Name: Penny Yocom
Website: uswest
Referred by: From a Friend
From: Phoenix, Az.
Time: 1998-11-24 04:13:02
Comments: PRIVATE MESSAGE
Name: Trish
Website:
Referred by: Yahoo!
From: Gillette, WY
Time: 1998-11-22 16:03:14
Comments: PRIVATE MESSAGE
Name: dwight r. cordero, m.d.
Website:
Referred by: Just Surfed On In
From: nyc
Time: 1998-11-22 04:01:59
Comments: Amie, what a great site you have created!!!!!! Are you ready for the semester to end? Keep up the good work
Name: amelia
Website:
Referred by: Just Surfed On In
From: columbia,sc
Time: 1998-11-19 11:43:23
Comments: i am a teacher. i have just gotten a new student(4th grade) who has t.c. syndrom. i'm trying to find out more a/ it. it's difficult to find good info. i really enjoyed your letter!!
Name: Amy Brady, Jennie Fisher
Website:
Referred by: Just Surfed On In
From: Marshalltown, Ia
Time: 1998-11-17 15:59:31
Comments: I think your attitude toward this is really great. I wish that more people could look at their lives in general like you do. You are very brave and are an inspiration to everyone with and without disabilities. Love, Amy
Name: jess
Website:
Referred by: Just Surfed On In
From:
Time: 1998-11-17 02:36:08
Comments: to that person that was wondering about golden arms syndrome. i am not sure of what it is but i do know a way you can find out. contact AboutFace U.S.A. P.O. Box 93 Limekiln, PA 19535 TEL: (800) 225-FACE. MY GRANDMOTHER WAS WONDERING IF YOU WERE TALKING ABOUT GOLDEN HARES SYNDROME? C-YA LATER, JESS
Name: jessica findlay
Website:
Referred by: Yahoo!
From: canada. saskatchewan
Time: 1998-11-17 01:35:28
Comments: hello, it is me again. how have you been? i am really happy that you are informing people about tcs. i am also pleased to see that so many people have come to check your site out. i should go for now so just write me back if you want to. that goes for anyone else who is reading this. luv, your friend Jess ps: always remember to smile !!!
Name: tina
Website:
Referred by: From a Friend
From:
Time: 1998-11-14 15:39:50
Comments: PRIVATE MESSAGE
Name: Linda Breuckman
Website:
Referred by: Just Surfed On In
From: Columbus wi.
Time: 1998-11-13 22:39:36
Comments: PRIVATE MESSAGE
Name: Jerry Forgette
Website:
Referred by: Yahoo!
From: Lake Elinore, CA
Time: 1998-11-13 20:50:44
Comments: Through Yahoo, I was searching for a birth defect called either harms golden palm, or arms golden palm. I'm not sure which. Maybe you could help, if not thats fine. But I couldn't pass up signing your guest book. Thankyou for giving me the oppurtunity. May God Bless you and may He continue to Bless millions through You. Jerry Forgette
Name: jessica findlay
Website:
Referred by: Yahoo!
From: saskatchewan, canada
Time: 1998-11-13 01:18:21
Comments: PRIVATE MESSAGE
Name: Michelle Guess Swain
Website:
Referred by: From a Friend
From: Little Rock, AR
Time: 1998-11-12 20:17:13
Comments: I have a wonderful friend who has treachers collins. I am glad you have great goals for yourself. Good luck in life and give thanks to the Creator-God.
Name: Dennis
Website:
Referred by: Just Surfed On In
From: Florida
Time: 1998-11-10 22:21:45
Comments: Wow, That is about all I can say. I knew nothing of tcs until stumbling on your page, and let me be perfectly honest with you. At first when I seen your pic I was shocked, but as I read your bio I was impressed to see a warm, beautiful and special human being. Thank you for opening my eyes, now I know what it is, maybe I can help do something about it. Send me more info if you have it. Stay special :) Your new cyber friend...Dennis
Name: Rachelle Gonzalez
Website:
Referred by: Just Surfed On In
From: Glendale, Az
Time: 1998-11-08 14:59:58
Comments: My niece actually has treacher collins syndrome. Her parents do not know to much about it so I am inquiring for them and for myself. I never knew there was such a thing as treachers collins sydrome. Your web page is very interesting and explains alot. Keep on smiling!!!
Name: Barb Schinderle
Website:
Referred by: Just Surfed On In
From: Grand Ledge, Michigan
Time: 1998-11-04 18:21:56
Comments: It was really inspiring to read your page. My daughter has Treacher Collins Syndrome and is now 7 years old. She's an absolute doll and the joy of our lives (along with our two other children). I strongly believe in inclusive education and that people should be judged by what is on the inside, not the outside. Thanks for your page and best of luck to you. It sounds like you've really got your act together. Take good care.
Name: Gordon,Shona &Natalie Sydney
Website:
Referred by: Just Surfed On In
From: East Kilbride, Scotland.
Time: 1998-11-02 22:13:33
Comments: Hi ! We've got a daughter, Natalie, who has TCS. She'll be 4 on 18 December, and she's just like any other (almost) four-year-old ! Good to see your Website, we'll probably catch up with you in the future. Good Living !!!!
Name: Danielle Hockey
Website: don't have a homepage
Referred by: Geocities
From: Virginia Beach, Virginia
Time: 1998-10-31 14:24:13
Comments: I work in at Children's Hospital of The King's Daughters in Norfolk, VA and we currently have a 6 year old on the floor who underwent mandibular advancement. We (the nurses) were looking for more info on TCS and I want to thank you for taking on this tremendous task, so that others can better understand what this syndrome is all about. We also have another little baby with TCS and your web page will help us better understand TCS. Good luck at school. Danielle
Name: Jessica Currie
Website:
Referred by: Just Surfed On In
From: a little town in New York
Time: 1998-10-27 18:36:51
Comments: I am doing a research paper on TCS. I know of this syndorme because my nephew has it. His hearing and vision so far is perfect. Best of luck to you. Sincerly, Jessica Currie
Name: JOHN & DEBBIE LUTZ
Website:
Referred by: From a Friend
From: SAN DIEGO
Time: 1998-10-27 03:40:51
Comments: Amie - Thank you for this wonderful page, picture and information. We are the grand parents of a treacher collins 3 year old girl and while we were reading your page and listening to your music, our grand daughter, Caitlyn Elizabeth Owen, CEO :-), with her hearing aides on, had me dance with her. (I'm the grand father). We found you, like our Caitlyn to be "beautiful" and know that with support and love she will grow up to have your wisdom, maturity, kindness, tolerance and love. My wife, Deb, made your home page a favorite place and we will visit it often to experience all of it - your friends and family etc. Caitlyn has had 3 surgeries to reconstruct her face and palate and will have many more. She has no outer ear, wears a hearing aid, has a trach and is fed thru a G tube. She is very happy and active and normal in every sense. She is blond like you and has blue eyes. We will tell her all about you and show her your home page and explain your similarities and again will visit you. Thanks, and Love fro
Name: ROSAMARIA SICILIA
Website:
Referred by: Just Surfed On In
From: VIRGINIA-PHILADELPHIA
Time: 1998-10-24 02:00:56
Comments: AMIE, MY NAME IS ROSAMARIA AND I M 25 YEARS OLD AND I HAVE TREACHER COLLINS SYNDROME. I SOMETIMES THINK YOU HAVE MORE SRENGHT THAN I DO. I ADMIRE YOU FOR YOUR ENCOURAGEMENT AND BRAVERY TO GO ON WITH YOUR LIFE AND BE WHO YOU ARE INSIDE. DON'T LET ANYONE TELL YOU DIFFERENT. GO AFTER YOU DREAMS AND DON'T GIVE UP UNTIL YOU ACCOMPLISH THOSE GOALS. KEEP IN TOUCH
Name: Karissa Ladlie
Website:
Referred by: Net Search
From: MN
Time: 1998-10-23 20:18:58
Comments: PRIVATE MESSAGE
Name: Laura
Website:
Referred by: Just Surfed On In
From: ARGENTINA
Time: 1998-10-20 01:19:54
Comments: Amie... It's so delightful to read and to feel that you live happily with TCS...it really lightes up my heart... Please be a very happy person, and always remember that essential is invisible to the eye.... Laura, from Buenos Aires-Argentina
Name: Piotr Wawrowski
Website:
Referred by: Yahoo!
From: Poznan, Poland
Time: 1998-10-20 00:00:04
Comments: Hi:) Actually I'm doing a little search for some rare genetic diseases and disorders. I found Your place very interesting. Thanx:) Wish You luck, and remember, always keep trying:)))
Name: Katie Pech
Website:
Referred by: Just Surfed On In
From: Akron, Co
Time: 1998-10-13 17:13:18
Comments: I was doing research for genetic disorders when I came across your page. I just want to let you know that you seem really cool and you are also very, very beautiful.
Name: Jackie
Website:
Referred by: Geocities
From: Memphis
Time: 1998-10-12 04:44:49
Comments: I was glad to find this page. My son has Treacher Collins and while he is too young to use the internet,I'm happy to find this. I hope my son is as happy as you seem to be. I worry about him. He has had three surgeries so far and he just takes it in stride, which is incredible. He will love to see the pictures of you with the dog.Thank you for sharing your story.
Name: chris diehl
Website: The Real Deals
Referred by: Just Surfed On In
From: Maryland
Time: 1998-10-05 23:44:20
Comments: Hello Aimee, My name is chris i as a program coordinator for adults with developmental disabilities. I have one fellow who is 60, he is mildly retarded and has treacher collins syndrom, i was just surfing the web to find out more about treacher collins. I found your page very informative, thank you for taking the time to do such a great page. I did have one question, i think the possibilities of being MR and having this syndrome are pretty slim is that true, do you know more about that. i enjoyed your web page. Good luck with your degree (that is if you already have not finished) Sincerely, Chris Diehl
Name: Kelly LoBianco
Website:
Referred by: Yahoo!
From: Chicago, IL
Time: 1998-10-04 06:34:14
Comments: PRIVATE MESSAGE
Name: Michael Srock
Website: Thanx For Stopping By
Referred by: Just Surfed On In
From: Florida
Time: 1998-10-04 05:27:08
Comments: PRIVATE MESSAGE
Name: Susan Metz
Website:
Referred by: AOL
From: Manassas, Virginia
Time: 1998-10-02 19:11:48
Comments: Hi Amie, I searched for Treacher Collins because a young girl in my daughters hearing impaired class has it. I figured that instead of being ignorant of the disorder, I would educate myself. I enjoyed your home page very much. You are a high-spirited, beautiful lady. I will pass along my knowlege to others. Susie
Name: Victoria Oliver-Macklin
Website: Vicki's Homepage!
Referred by: Yahoo!
From: London, England
Time: 1998-10-02 11:32:41
Comments: Amie I have TCS myself and was very interested to read your pages. Your site looks lovely, and I think anything that goes towards increasing the understanding of TCS to those that call themselves normal (!) is great! Good luck in your studies! Vicki
Name: claudio pacheco
Website:
Referred by: Yahoo!
From: brazil
Time: 1998-10-02 02:18:36
Comments: Hi, Amie! I liked very much your home page. You teach us how beautiful the life is. I'm a pediatrician and few months ago I examined a new born with tcs. Unfortunatly I don't have contact with the family anymore.
Name: Emily Dwenger
Website:
Referred by: From a Friend
From: Indianapolis, IN
Time: 1998-10-02 00:29:58
Comments: PRIVATE MESSAGE
Name: Marialaina Maszon
Website:
Referred by: Yahoo!
From: baltimore,maryland
Time: 1998-10-01 17:23:26
Comments: HI, I REALLY ENJOY YOUR SITE, I COME ON ALL THE TIME, DURING MY LUNCH PERIOD AT SCHOOL. MY NEPHEW, BRANDON, ( 5YRS.) HAS TCS, I LOVE HIM TO DEATH AND ALREADY GOT TO A FIST FIGHT OVER SOMETHING SOMEONE SAID ABOUT HIM. I JUST HOPE WHEN HE IS OLD ENOUGH, HE WILL HAVE POSITIVE OUT LOOK LIKE YOURS. MARIALAINA
Name: jane kennington
Website:
Referred by: AOL
From: jacksonville, florida
Time: 1998-10-01 05:32:43
Comments: PRIVATE MESSAGE
Name: Linda Blackwell
Website:
Referred by: Just Surfed On In
From: Raleigh, NC
Time: 1998-09-29 18:20:29
Comments: PRIVATE MESSAGE
Name: Andi Hunsinger
Website:
Referred by: Yahoo!
From: St. Petersburg FL
Time: 1998-09-29 01:55:03
Comments: I work in a day care center for medically -fragile children; a new baby (about 1 month old--I don't have his birthdate with me at home) was enrolled today. I will be evaluating him tomorrow and was looking for more information. Thanks for providing it! I will copy your page to provide information and help the staff see his potential.
Name: Tim Davis, OTR
Website:
Referred by: Just Surfed On In
From: Midland, TX
Time: 1998-09-20 00:28:11
Comments: What a great page! I am an occupational therapist and have had the opportunity to work with one TC child under the age of 3. Therapy is provided through the Infant Stimulation Program (birth to 3yrs) in our area, early childhood intervention (3 to school-aged) then your local Independent school district (up to age 21). The point is, therapeutic intervention, if needed, is available (free of charge to the parents) for all sorts of diagnoses, syndromes, prematurity, developmantal delays..., but is way UNDERUTILIZED!!! Perhaps your readers and parents of other TC kids will take advantage of services that are available but not well known. A good resource would be your local MHMR office or (hopefully) the family physician. Congrats on your perseverence, you have my respect both personally and professionally. Hook 'em Horns!
Name: travis william walker
Website:
Referred by: Just Surfed On In
From: Spokane Wash.
Time: 1998-09-19 23:51:11
Comments: Hi,how are you doing? I am 14 yrs. old and have treacher collins syndrome (tcs). I go to Seattle for check-ups and surgerys at Childrens Hospital. I had a trache but I don't have it but I still have hole in my neck. I wear a bone-conductor hearing aid on a head-band I like it because I can turn off my sister ha ha. I am in 8th grade and i hope I can do as well as you. I am really into Wolves and how they live and their habits and i hope someday I can study them. So I hope to go to college and get a degree so I can study Wolves. do you have a favorite animal you like and are interested in? I read your web page and printed it so i could keep it for later. I was really excited about the Hearing-aid implant that was in the web page I got. I'm hoping that I can get one later on. It would sure be easier to deal with.
Name: tcw
Website:
Referred by: Yahoo!
From: california
Time: 1998-09-14 22:08:20
Comments: I am glad that you feel able to live a normal life....ppl can be so cruel now a days....ppl shouldnt be like that....be happy at what God blessed you wit and always keep you family and friends for support.....tcw
Name: Leona R. Hanneken
Website: none
Referred by: Net Search
From: Spokane Washington
Time: 1998-09-11 04:58:47
Comments: PRIVATE MESSAGE
Name: Bert Guzman
Website:
Referred by: Just Surfed On In
From: Tucson,AZ
Time: 1998-09-09 19:01:32
Comments: I love your page. It is an inspiration. My 22 year old son Felipe also has "T Syndrome". He lives a normal and productive live! I love him very much.. I don't know what to do without Him> I love you too, thank you for your inspiration.. Love Bert Guzman
Name: Basira Bush
Website:
Referred by: Yahoo!
From: near Charlottesville, VA
Time: 1998-09-06 16:41:19
Comments: PRIVATE MESSAGE
Name: Ruth Marie Kampia
Website:
Referred by: Just Surfed On In
From:
Time: 1998-09-06 01:27:29
Comments: I am a college junior with either TCS or something closely related--none of the doctors I've been to have been very clear about my deformity. "All" I have is a never-developed middle and outer ear, and my jaw is significantly tighter on that side. Because I can hide my deformity under my hair, people view me as "normal", but I've always felt set apart. I was offered that hearing aid headband when I was younger, but it was decided that it wouldn't help me much unless my ear canal was opened through surgery. My doctors didn't recommend surgery because of the risks at that time, and the small possibility that it would actually help. I'm happy with myself the way I am and can't imagine life any other way, but no one else can imagine the daily troubles I have with the stupidest things, such as noise, air pressure, and even blowing up balloons. I was told that my body could not easily adapt to a hearing aid, so when I say I have a hearing problem people just joke about it or aren't very sympathetic. I REALLY appreciate this website, and I think there are way too many people out there who insensitively shy away from people who are different.
Name: Chris Wilson
Website:
Referred by: Net Search
From: Longmont/Greeley Colorado
Time: 1998-09-02 00:14:40
Comments: Hi Amie! Though we are but one in a thousand, people like you are one in several million. :) I know very few people who have the strength to be as outgoing and as understanding of 'normal' people as you are, based on your page. I have to admit that thru my experiences (meeting people who surgeries and all) that there are few people with TC who aren't bitter about the world for the way they've been treated. By now you may have guessed that I also have TC. With some very considerate people around me, tho, I can't say that I've had quite the difficulty that you have. You've given me a little more encouragement, too, just with the strength you've demonstrated. For that, I thank you. :) Perhaps you've made another friend or two today. :)) Chris
Name: Michelle
Website:
Referred by: AOL
From: Pueblo, Colorado
Time: 1998-09-01 15:42:47
Comments: PRIVATE MESSAGE
Name: Bob Osborn
Website:
Referred by: Just Surfed On In
From: Eaton Rapids, Mi
Time: 1998-09-01 01:22:58
Comments: Amie: I got the address from your grandfather, who is my uncle. Good job on the home page. Your grandparents have been bragging it up and now I see why. Don't give up on the writing, by the way, especially once you get to med school. Hang in there with the studies. Say "Hi" to your dad, I'll get an e-mail to him one of these days.
Name: elizabeth nabavi
Website:
Referred by: Yahoo!
From: oklahoma city, ok
Time: 1998-08-29 01:53:27
Comments: I am a master of audiology student doing a research project on treacher collins syndrome. thank you for the insight into the life of a person living with this syndrome. it really helps to hear from someone dealing with it rather than a scientist talking about it. those of us in the helping fields could really use articles like yours to make us better clinicians. thanks!
Name: Makenzie Coffey
Website:
Referred by: Just Surfed On In
From: Junction City, KS
Time: 1998-08-27 03:13:44
Comments: Thanks for the information, my neice, Hanna was born yesterday 8/25/98 with Treacher-Collins and I needed to find out about it and your page was the best. Thanks for the confendence and information Makenzie Coffey
Name: Jennifer
Website:
Referred by: Just Surfed On In
From: Missouri
Time: 1998-08-25 19:21:32
Comments: Well, I just wanted to tell you that you really inspired me to change my prospective on life. God bless you in what ever you do!! Jenny
Name: Stephanie Herlihy
Website:
Referred by: Just Surfed On In
From: New Hampshire
Time: 1998-08-24 16:07:11
Comments: My daughter (age 9) and I read your page and found it very helpful to explain how you cannot judge a book by its' cover. Thank you!
Name: daron orzech
Website:
Referred by: Just Surfed On In
From: ft ymers fla
Time: 1998-08-22 15:19:01
Comments: i was very touched by your site and want to commend you for living your life to its fullest we are parents of a wonderful son (3)diagnosed with treachers collins syndrome he was also borned without any external ears at all he has bone conduction hearing aids as well as you do. God bless you and thank you for touching our hearts. sincerly Daron and Sharon Orzech
Name: Konrad Oberbacher
Website: no homepage
Referred by: Lycos
From: Munich, Germany
Time: 1998-08-22 08:21:21
Comments: PRIVATE MESSAGE
Name: Karen E. Bitsoie
Website:
Referred by: Just Surfed On In
From: Mesa, Arizona
Time: 1998-08-07 18:53:42
Comments: Came here via Ann Nevin's introduction to special education class. I glanced through your homepage and found it very interesting. Ann and myself espeially enjoyed your "top ten reasons for being different". We thought it was great. When I have more time I will go through your homepage more in depth. We'll bye for now. Karen
Name: CINDY SMITHERS
Website:
Referred by: Yahoo!
From: ROCKFORD, MICHIGAN
Time: 1998-07-25 22:23:46
Comments: AMIE, I FOUND YOUR PAGE WHILE SEARCHING YAHOO FOR INFO ON TCS FOR A FRIEND WHOSE SON HAS TCS. I FOUND YOUR STORY VERY INTERSTING AND PRINTED HER A COPY TO SHARE WITH HER SON. YOU ARE A VERY BEAUTIFUL PERSON! KEEP UP THE GOOD WORK. SINCERELY, CINDY
Name: elizabeth cooper
Website:
Referred by: Yahoo!
From: Jamaica
Time: 1998-07-23 15:26:48
Comments: PRIVATE MESSAGE
Name: La Plante Famliy
Website:
Referred by: Just Surfed On In
From: Aromas, Ca. 95004
Time: 1998-07-20 00:18:50
Comments: Hi: Amie We are also, a famliy with three generation of T.C.S.My father in-law bob, My husdand Dennis,and My daughter Becky she has a tracher. Between the three of them, they have had about 100 surgerys, Becky's most recent surgery was her jaw surgery with brackets. I think you have a Great! idea of putting this home page together for famlies, to talk to each other and get information. we are willing to talk to any famlies, about what we know about T.C.S. thanks so much, hope to hear from you,or any body soon. julie La Plante arfirebugz@aol.com
Name: CeCe
Website:
Referred by: From a Friend
From: Georgia
Time: 1998-07-17 04:56:18
Comments: Hello! My name is CeCe. My sister'n'law told me about your web page! Your page is one of the first personal web pages talking about Treacher Collins Syndrome. I am now completeing a web page on my own talking about Treacher Collins, I have Treacher Collins, too!
Name: sietske
Website:
Referred by: Yahoo!
From: the netherlands
Time: 1998-07-15 18:31:30
Comments: hi, you homepage is very nice and i wish you all the best! I was just trying to find some info on the net about my sons little ears. I think he has microsomie. But anyway its very difficult to type a message withhim playing on my lap. greetings!
Name: Amanda Defreitas
Website:
Referred by: Just Surfed On In
From: Rocklin Ca.
Time: 1998-07-10 17:54:56
Comments: Hi I was doing a report on genetic diseases and found your page. It was very informitive and helpful. i did not know of this before so now i do thank you Amanda ps. if you have any more info e-mail me at crazychick@england.com
Name: Karen Davis
Website: The Hobbit Hole
Referred by: From Geocities
From: Los Angeles
Time: 1998-06-24 10:34:38
Comments: Very nice site, glad to have the chance to get to know you from one individual with a genetic condition to another. :)
Name: Kathy Matthews
Website:
Referred by: Just Surfed On In
From: Spring Valley Illinois
Time: 1998-06-19 04:28:19
Comments: PRIVATE MESSAGE
Name: Anne
Website:
Referred by: Just Surfed On In
From: Kapuskasing, Ontario. Canada
Time: 1998-06-14 04:43:30
Comments: Hi! Amie I saw your page and I think that your a sweet person. It must take a lot of courage and strenght to have to face the world . I found it really amazing when I read that you have benefited by your condition, because it has made you into the person that you are today. I really respect this about you. And you know, God, does not look at appearances, he looks at the heart condition of people, if their humble, honest and hungry for his spiritual food and are willing to get to know him and to worship him. Those are what he loves. Isn't it nice to know that God is not a God that expects perfection in us? I really would invite you to look into his word, the Bible and see for yourself that God has promised us that soon he will wipe away all tears from our eyes and death and mourning will pass away and he will help us transform the earth into a beautiful paradise. Revelation 21:1-7. Hope to hear from you Amie.
Name: Peter D
Website:
Referred by: Just Surfed On In
From: Ireland
Time: 1998-05-27 14:09:46
Comments: Amie - Your page is brilliant.I can relate to your problems as I have TCS myself. I am 22 years of age. I reckon I am lucky in a way because I don't think I am as severe as other sufferers. I have plenty of breathing problems to beat the band (sleep apnoea, etc) and my hearing is woeful (I used to wear a hearing aid but I don't really wear one now), and my face is a bit messed up (most notably my eyes which kind of bulge out like a fish and my eyelids look like I ripped them off a baby camel and sowed them onto my own). I know that people can be very cruel and mean from experience. Over the years I have become a bit paranoid like when strangers pass me on the street(especially younger people), I sometimes like around to see if they are talking or laughing behind my back. The worst thing about it all, though, is the way I talk. You know the way when you hear yourself talking on tape recorder your voice sounds so different and you think it's terrible, well when I hear myself talk, I realise why people laugh at me but it's something I have to live with for the rest of my life. I suppose in a way I find it hard to socialise because I am embarrased of myself. There is no history of TCS in my familly at all - How unlucky could you get! So as a result I doubt if I will have any children. I know it's a 50-50 chance but the chances of me getting getting TCS were 10,000 to 1 so what chance have I with odds of 2 to 1! As you have said yourself, it's whats behind the face that really counts. I do get depressed that I am like this and wonder why I wasn't made like other fellas who seem to have everthing going for them. There is such a thing as cosmetic surgery but the way I see it is that God made me like this so why should I change? I thought the 10 things on your list were spot on, especially the fact that people remember you, and your right, the strangest things DO happen! I know that, like every other TCS sufferer, I am completely normal and probably more normal than most people, underneath it all, at the end of the day. I am doing computers in college at the moment which is heavy going. I hope I am on the road to being proud of who I am and worry about more important things in life, like living it to the full. Thanks, Peter
Name: C. Valentine
Website:
Referred by: Word of Mouth
From: Fairfax, VA
Time: 1998-05-27 11:34:57
Comments: Thank you Amie, for enlightening our family on Treacher Collins Syndrome. We have a young couple in our church who have just had their first baby. Not only did the mother suffer a ruptured brain aneurism seven months into her pregnancy, but Copeland Susan had to be delivered premature and is a Treacher Collins baby. We were concerned how the church family would respond when they see Copeland for the first time. The parents are learning much, but we feel our congregation needs to know and understand more, too. Your "page" was a great way to get introduced to the feelings a Treacher Collins person has regarding their relationship to others. We want to know how to help our friends and encourage them and Copeland as she grows to be the child God wants her to be.
Name: Bill & Claire Keighley
Website:
Referred by: Word of Mouth
From: Katy, Texas (Houston)
Time: 1998-05-26 01:02:14
Comments: Hi Amie, I just signed on with your Dad's help. Love your homepage. All The Best Bill & Claire
Name: Diane Kleuskens
Website:
Referred by: Just Surfed On In
From: Lansing, IL.
Time: 1998-05-24 02:47:47
Comments:
Name: Ann Piesen
Website:
Referred by: Just Surfed On In
From: Washington, DC
Time: 1998-05-21 21:59:33
Comments: Heya Amie! You have a great additude! I'm second generation TCS (my father has it), and spent many years being angry about being "different". It wasn't until junior year of high school that I realized that it didn't matter what others thought of me, it's what I thought of myself that mattered. Life is been good ever since. Keep up the webpage - it's a terrific resouce!
Name: sharon mcfarlane
Website: none
Referred by: Word of Mouth
From: Glasgow, kirkintilloch
Time: 1998-05-18 12:58:10
Comments: i also have TCS and i find it hard to relate to other people who have the same syndrome, and i hate getting sympathy. The most bravest people are the ones that can talk about their syndrome like amie. ps. great web site
Name: Jean
Website:
Referred by: Word of Mouth
From:
Time: 1998-05-15 22:46:59
Comments: PRIVATE MESSAGE
Name: Rachel Bolton
Website: LiBrAgRrL's Land of Foolishness
Referred by: Net Search
From: Hubbardston, MI
Time: 1998-05-13 21:28:14
Comments: Your page should be on the top ten most organized personal home pages on the web...this is great!!! Please come to see my page, and PLEASE SIGN MY GUESTBOOK!!!
Name: Naomi E. Durbin
Website: none
Referred by: From Geocities
From: Louisville ky
Time: 1998-05-12 05:24:38
Comments: my nefew was born tcs he is 8 and has had many operations to consruct his face . none in our family has this and we have very little information . thank you for your page .
Name: BRUCE JACKSON
Website:
Referred by: Net Search
From: DETROIT, MICHIGAN
Time: 1998-05-12 03:22:13
Comments: THANK YOU FOR THE INSIGHT OF TCS. I JUST HAD A GRANDSON BORN WITH IT AND JUST WANTED TO KNOW A LITTLE MORE ABOUT IT FROM A 1st HAND VIEW INSTEAD OF JUST WHAT WE HEAR FROM THE DOCTORS. AS FAR AS I'M CONCERNED, YOU ARE NORMAL AND I HOPE MY GRANDSON AND HIS PARENTS CAN COME TO UNDERSTAND THAT. THANKS BRUCE
Name: ALLISON ULRICH
Website:
Referred by: Word of Mouth
From: YONKERS NY
Time: 1998-05-11 17:58:21
Comments: PRIVATE MESSAGE
Name: Robert Powell
Website:
Referred by: From AngelFire
From: Jefferson City, Missouri
Time: 1998-05-11 04:05:28
Comments: PRIVATE MESSAGE
Name: Sharon Collins
Website:
Referred by: Just Surfed On In
From: West Sussex, England
Time: 1998-05-06 13:09:58
Comments: PRIVATE MESSAGE
Name: Mike Penney
Website:
Referred by: Just Surfed On In
From: Cedar Rapids Ia.
Time: 1998-05-03 18:18:04
Comments: I was just looking here for this to be part of my eighth grade project and I think anyone who has this disease and any other disease should take Amie in as a role model she took what she had and made the best of it.
Name: Jenn
Website: Special Needs ~ Special Kids (Disability Awareness)
Referred by: Just Surfed On In
From: Toronto, Ontario
Time: 1998-04-27 06:48:37
Comments: Hi! I really love your page! I too believe that its not whats on the outside that counts, its whats in the inside! I don't have TCS, nor any other disorder, disability or anything. But I do work with children and teens who have various disabilities. I am also out for the same thing you are: brighter futures for children with special needs, and disability awareness. With awareness comes knowledge, and with knowledge comes awareness. And with awareness comes acceptance. And so on and so on. Would you be interested in joining my web ring? It would give others the chance to find your site and learn more about TCS while surfing page to page on our common theme. If you are interested, the information is at http://members.tripod.com/~imaware/brighter.html . By the way, I also am very interested in Communication Disorders, and hope to get my masters in Speech Language Pathology at some point in the future. Keep up the good work!..... Jenn :)
Name: NICOLE DAYE
Website:
Referred by: Just Surfed On In
From: MINDEN,LOUISIANA
Time: 1998-04-26 22:59:28
Comments: THANK YOU FOR THE VALUABLE INFORMATION ON TCS.I'M DOING A REPORT ON GENTIC DISORDERS AND YOUR SITE REALLY HELPED OUT.THANKS!!!!!!!!
Name: Rhonda Lazenby
Website:
Referred by: Just Surfed On In
From: College Station
Time: 1998-04-26 03:01:53
Comments: PRIVATE MESSAGE
Name: Maria Odalis Zamora
Website:
Referred by: Net Search
From: Miami and Gainesville, FL
Time: 1998-04-25 22:22:13
Comments: I am a dental student at the University of Florida and I am interested in Treacher Collins syndrome.
Name: Laura Yenglin
Website:
Referred by: Just Surfed On In
From: origionally from Lakewood, CO
Time: 1998-04-25 07:20:37
Comments: I am a Graduate student at the University of Oregon, and I am currently enrolled in a Congenital Disorders class. I will be writing a short paper about Treacher Collins (cause, characteristics, treatment, medical/social implications), and I will be sharing my information with our class. I am studying to be a speech-language pathologist, so I am particularly interested in the effects of the Syndrome in regard to speech, languag, and hearing difficulties. Your page contains some great information, and inspiring words, Thank you!
Name: Sandee Velazquez
Website:
Referred by: Net Search
From: North Carolina
Time: 1998-04-23 17:44:21
Comments: Amie~ I was looking up Genetic Disorders on the net, for my freshman biology class and not to happy about having to do it. I came across your page...and decided to take a look.... why not right? Well when I walked into this computer lab this afternoon I had no idea that such a disorder existed... I've decided to do my paper on this topic and I hope thatI can use some info from your page on this paper. Like I said when I walked in here I knew nothing about this disorder or many others that I have found today...but now that I have at least some sense of awareness as to what it is that surrounds me everyday I think that my world is a better place....I wish you the best of everything...but from the sound of things....you already have it.
Name: Roxanne Sullivan
Website:
Referred by: Just Surfed On In
From: Omaha, NE
Time: 1998-04-20 02:09:16
Comments: Amie! What a wonderful page! You're an inspiration to us all. I wish everyone could feel about themselves the way you do about yourself. I know several people who could learn a valuable lesson from your example. It's the inner person that is really important and we should look at life as an adventure to be savored! Take care!
Name: Ashley Ramsey
Website:
Referred by: Just Surfed On In
From: San Antonio
Time: 1998-04-20 00:53:02
Comments: Hey Amie! Cute web page!
Name: Connie Steadman
Website:
Referred by: Net Search
From: Berwick,PA
Time: 1998-04-19 20:29:04
Comments: Thanks for the wonderful web pages you've designed. I have cared for a little girl that just turned 2 years old and has TCS. She is the most beautiful little girl I know, with more love in her heart and eyes than most people have ever seen.
Name: nicky Kimbrough
Website:
Referred by: Just Surfed On In
From: Lincoln, NE
Time: 1998-04-19 06:11:26
Comments: Hi how's it going? I was just wondering, i noticed that when i saw the pictures of you and your family, that TCS isn't as noticeable on your mother and hardly at all on your grandfather. Why is that? have they had surgery? I think you are a very strong and courageous person and your message is a great one!!! goodbye from Nebraska.
Name: Erik
Website:
Referred by: Just Surfed On In
From: Iowa
Time: 1998-04-19 05:36:23
Comments: At first I felt sorry for you, but now I don't. I envy you for having the courage to be happy even when others don't want you to. Keep smiling. :) (: I, too, am Pre-Med! I wish you good luck. Also, I love the way your name is spelled!!! Erik
Name: Joan Fleitas
Website: Band-Aides and Blackboards...
Referred by: Word of Mouth
From: Connecticut
Time: 1998-04-18 05:22:21
Comments: Your page is wonderful, and I hope that you'd consider telling your story on my site as well. I hope that you'll have time to take a look. The site is designed to sensitize people to what it's like to grow up with medical problems. I share in its authorship with children around the world who are doing just that, and who told me their stories. The stories are poignant, varied, and speak of the stigma that so many of them experience. I have developed a comprehensive web site with this data, writing stories, designing strategies of inclusion, publishing hints from the children to others, and interviewing hospitalized kids so that they could, through the web, orient others, and gain some status in the process. I have separate pages for teen stories, too! I have a page called something like "people say the strangest things, and I'd love to include your pinocchio story on it if that's OK with you. All the best, Joan
Name: Jillian Faith Barger
Website:
Referred by: Just Surfed On In
From:
Time: 1998-04-18 04:59:34
Comments: Hi! My name is Jill Barger. I'm a 21-year-old communication disorders major at marshall university in huntington, wv. i love to educate others about my "disconvenience" (cerebral palsy), listen to music, write poetry, read, and hang out with friends and family. if you'd like, email me! i love meeting others!!!!!!!!!!!! :)
Name: Kami Argyle
Website:
Referred by: Just Surfed On In
From: Utah
Time: 1998-04-17 02:00:02
Comments: PRIVATE MESSAGE
Name: Kristi Riley
Website:
Referred by: Just Surfed On In
From: Gainesville, FL
Time: 1998-04-12 22:55:54
Comments: your page has truly inspired me. the reason i am writing is a couple that is dear to me just had a little girl born with TCS. it came as a shock to me because i did not know such a thing existed. last night (april 11) was the first time i had seen the pictures. i must admit i almost cried because i thought how could this have happened? then i thought again what a miracle birth is no matter what challenges you may have to face. you have triumphed over society in a tremendous way. i hope and pray that this little angel will follow in your footsteps. you are an inspiration to all
Name: Leightan Wishart
Website:
Referred by: Just Surfed On In
From: British Columbia
Time: 1998-04-12 19:37:29
Comments: Great website!! Thanks!!
Name: Greg Stringfellow
Website:
Referred by: Just Surfed On In
From: Austin, TX
Time: 1998-04-12 07:35:08
Comments: PRIVATE MESSAGE
Name: Tony Davies
Website:
Referred by: From LinkExchange
From: Cardiff, Wales
Time: 1998-04-11 19:38:36
Comments: I have mild TC and would like to speak to other people about it.
Name: terri roberts
Website:
Referred by: Just Surfed On In
From: johnson city, TN
Time: 1998-04-11 16:59:15
Comments: Hi Amie! I absolutely loved your web page. You've got good taste!
Name: Janet G. Wallace
Website:
Referred by: From LinkExchange
From: Rochester, NY.
Time: 1998-04-11 04:23:02
Comments: My wife Janet, an R.N., will soon be taking care of a four month old girl with treacher collins. We were looking for information to help her in that new duty....thanks...tam
Name: Michael Banigan
Website: BalleForte
Referred by: Word of Mouth
From: Boston, Houston, Mars
Time: 1998-04-05 06:16:32
Comments: Amie, Hi, Sweetie! Thanks for dinner tonight! MY BOYFRIEND and I viewed your page this evening. I bet you'll check it soon! Have fun talking to Brian and please see Mike's page when you have time. Your page is very interesting! Thank you for sharing it with us -Tricia and Mike
Name: Michelle Ashby
Website: don't have one yet
Referred by: Just Surfed On In
From: Utah
Time: 1998-04-04 00:23:07
Comments: I wish you the best of luck. Always keep a smile on your face and you will be ok.
Name: Stephanie Bowers
Website:
Referred by: Net Search
From: El Paso, Texas
Time: 1998-04-01 19:38:04
Comments: PRIVATE MESSAGE
Name: HAPPY VON DOHLEN
Website:
Referred by: Just Surfed On In
From: San Antonio, Texas
Time: 1998-04-01 00:21:29
Comments: I am completely inspired by your desire to educate others. I found your homepage by default. I know a girl, well she is really just an acquaintance from high school. Anyway, we are both 28 now, but I heard through the grapevine that she was pregnant. She and her husband were informed early on that their baby had a craniofacial disorder. I got all of this "news" from her close friends that felt so badly for her. Well, I graduated from Texas A&M with a masters in special education. I had been around so many different people with a wide variety of disabilities that I felt this urge to call this girl and let her know I was thinking about her. This probably sounds so strange. Anyway, I found her number and called her completely out of the blue. She remembered me simply because I have a weird name. She was having a "down day" but I let her know that I was praying for her and her husband to have the strength to handle their unique situation. I felt really weird telling this girl that I was going to pray for her and the baby because I didn't know if she would think I was a religious freak. From what we talked about that day, I think the conversation went well. Since, I have heard that she did give birth to a son and the baby did have multiple complications. However, I am certain that God only gives us what He knows we can handle. I am so happy that God gave that baby to Jenny. I am so happy that he will have all the opportunities that you are having to become an independent, and obviously successful individual. I am pregnant now. I feel so confident that whatever lies ahead is simply a gift. I don't pray so much for a healthy child, rather, I pray for a child that is so outgoing, positive, and one that makes the best out of what life offers. Thank you for reminding me to be humble. I hope your life continues to be as great as these formative years. I hope you continue to have fun in college! It truly is one of the hightlights of my life. If I ever get in touch with Jenny, I will mention your website. I am not sure if her son has TCS, Apert or Crouzon but anyone could learn from your well written and eloquent story. Thank you for your giving heart. God Bless, Happy.
Name: Pone
Website:
Referred by: Word of Mouth
From: Pa
Time: 1998-03-29 13:38:58
Comments: PRIVATE MESSAGE
Name: Rhonda Lazenby
Website:
Referred by: Just Surfed On In
From: College Station
Time: 1998-03-28 20:25:59
Comments: Wow! What else can I say about finding your homepage. I am so proud that you have found a way to share a bit of yourself with others. To everyone who reads this.... Amie is a wonderful person, full of life and dreams for a bright future. Keep up the good work and let us hear from you. We are at that "other" university town, you know, Amie. Mrs. Lazenby
Name: Corinna DeGeer
Website:
Referred by: NewsGroups
From: Guelph, Ontario, Canada
Time: 1998-03-26 18:38:42
Comments: PRIVATE MESSAGE
Name: Steve Bensen
Website:
Referred by: Just Surfed On In
From: Aberdeen, SD
Time: 1998-03-24 21:16:28
Comments: Amy, Hi, my name is Steve Bensen and I live in Aberdeen, SD. I too have Treacher Collins Syndrome. I am 18 years old. I have no external ears and I also have a bone conduction hear- a-naid. I am doing a research paper on this for the first time and wondered if you could possibly tell me where I could get some real good information. I only thing I really know about it is that the experiences I have gone through in my life. I have had 4-5 surgeries and still have more coming. I know what you mean about people think we are dumb and retarded sometimes. I too have good friends. I you could please email me so I can see what other people are going through too with TCS. You are the first person I have ever known with TCS. Steve Bensen
Name: Jodi
Website:
Referred by: Word of Mouth
From:
Time: 1998-03-24 05:47:45
Comments: PRIVATE MESSAGE
Name: Mimi
Website:
Referred by: Net Search
From: California
Time: 1998-03-23 18:12:36
Comments: PRIVATE MESSAGE
Name: Terry Burau
Website:
Referred by: Word of Mouth
From: Redmond, WA
Time: 1998-03-23 03:23:37
Comments: Dear Amie--- My name is Terry Burau, and I'm one of the co-founders of the Rombergs Connection. I just saw your web page, and the first thing I wanted to do was give you a big hug.You are one of us! Until I saw your page, I'de never really seen anyone besides the Rombergs group who just decided, "What the heck. I think I'll tell everyone how great life is, and try to help make it better." Isn't it just a blast to make a difference? I've met my best friends because of Rombergs, and even got to travel for days on Amtrack to meet them. What an adventure! How does that old saying go? It is better to light a candle than curse the darkness? Well, we are all in the business of handing out matches. We don't need to hand out candles, because everyone has one. It's people like you that remind them to look for what they allready had.It's right there in their hands, just waiting to be lit. Boy, you put a smile on my face. And I just had to laugh when you mentioned Steve Martin. Guess what's playing on the USA network as I speak? Yep." Roxanne." Does God have a sense of humor, or what? By the way, one of your Dog's looks just like the one in "Wishbone." I love that show. Well, that's it for now. I want to go take a look at the pictures again. As we say on my side of the web... ( Group Hug) Terry Burau
Name: ELIZABETH KLASSEN
Website:
Referred by: Net Search
From: Vineland, Ontario,Canada
Time: 1998-03-20 04:17:03
Comments: PRIVATE MESSAGE
Name: Cindy
Website:
Referred by: Just Surfed On In
From: Palos Heights, IL
Time: 1998-03-20 02:34:08
Comments: Hi, My cousin's newborn baby was just diagnosed with TCS and I was surfing for info for the family. Your site is very helpful. Thank you for taking the time to share your life.
Name: Dustin Conner
Website:
Referred by: Net Search
From: Spindale, NC
Time: 1998-03-18 23:05:23
Comments: Dear Amie: Dustin and I(Mom)-(Susan Conner) really enjoyed your home page. Dustin and I would like to hear from you. Dustin is 9 years old and has Treacher Collins also. He had a trach for the first two years of his life along with a G-tube. We have coasted for many years with no surgeries, up until last August - 1997. He has had 2 surgeries on his right ear(microtia reconstruction). The third stage of the surgery will be in May 1998. He will also have to have a maxillary advancement along with a mandibular advancement at the same time. He also has the same problems at night breathing that you do. Please let us hear from you soon. Our address is: Dustin and Susan Conner 219 Deviney Street, Apt. 3 Spindale, NC 28160 Thanks! Susan Conner Dear Amie; I am in third grade and I am nine years old. School is okay. I have a four year old brother (five in April). Do you have any brothers or sisters? How many surgeries have you had? (Or have you had any at all?) I would like to hear from you soon. Your new friend, Dustin
Name: Jeana carbonari
Website:
Referred by: Just Surfed On In
From: glendale arizona
Time: 1998-03-17 15:07:52
Comments: PRIVATE MESSAGE
Name: Deanna Hill
Website:
Referred by: Just Surfed On In!
From: Missouri
Time: 1998-03-13 06:46:34
Comments: I was so happy to find someone on the internet that also has treacher collins...I felt so alone with this syndrom til I read your guest book and found that I was not alone. There are people out there with this too! I too wear hearing aids in both ears, have a receding chin with low cheekbones and slightly drooping eyes. When I saw a pic of your mom...she reminds me of me. I also had a rough time growing up...but it has made me stronger and lets me know who my real friends are! :) I learned also to feel beautiful on the inside...because..thats really all that matters. :)
Name: Lindsay
Website:
Referred by: Just Surfed On In!
From:
Time: 1998-03-12 19:15:17
Comments: hi
Name: Mssy
Website: Cool Page
Referred by: Just Surfed On In!
From: Spokane, Washington
Time: 1998-03-12 17:22:16
Comments: Hey Amie, I really liked your home page! I'm a junior at Eastern Washington University and I am also a Communication Disorders major. We briefly studied Treacher Collins Syndrome in class, so I thought I'd try to get a better idea of what it was. Your page was very informative as well as inspirational. You've picked a great major, and I hope you enjoy the field!
Name: Naomi Olvera
Website:
Referred by: Net Search
From: San Jose, Calif
Time: 1998-03-11 03:26:44
Comments: Hello! I was just searching for genetic disorders; I'm doing a report on one for my Genetics class. I came across your homepage while searching. I was touched, I read what you said about not living your life over any differently. I thought, "Right on!". I am happy to sign your guestbook. Peace and Love, I gotta go.
Name: Christina
Website: Capable Corners
Referred by: Word of Mouth
From: Hawaii
Time: 1998-03-11 03:17:55
Comments: Great Homepage. A lady at the Romeberg homepage asked me to put a link to your site on mine, I think I will Hope you check out my page when you have a sec! - Christina
Name: Theresa Hildebrand
Website: The Rombergs Connection
Referred by: From Geocities
From: Chicago, Illinois - USA
Time: 1998-03-09 19:58:00
Comments: Amie, Your page is "too cool." I know where you are coming from. My friend Terry & I just "founded" a support group for those of us lucky enough to have Rombergs Syndrome. Rombergs is another "no treatment, no cure, we have no idea what to do with you" disorder. I really like your outlook on life - it sounds alot like my outlook. Stop over and visit our page, and if you want you can write to me. Be sure to read my story at http://www.geocities.com/HotSprings/1018/theresa.htm Hope to hear from you. Peace, Theresa
Name: jenn
Website:
Referred by: Net Search
From: mt
Time: 1998-03-09 09:09:50
Comments: WHAT AN ABSOLUTE INSPIRATION YOU R AMIE!!!!!!!!!!!
Name: Murtaza Zamin Rizvi
Website:
Referred by: Just Surfed On In!
From: Karachi, Pakistan
Time: 1998-03-05 02:35:11
Comments: Being a final year medical student, i had a pretty good idea about the condition but going through your home page got me in touch with the emotional aspect, Something which i had never previously bothered to imagine. Now after reading your experiences I think i'll be more able to relate to my patients and look beyond the physical image that my closed mind always portrayed.
Name: Kelley Mitchell
Website:
Referred by: Just Surfed On In!
From: LaFayette, GA
Time: 1998-03-03 00:45:46
Comments: Hi, I was surfing home pages to get ideas for my own. I was impressed by your courage and poise. Sincerely, Kel
Name: Eric Gray
Website:
Referred by: Net Search
From: Plano, TX
Time: 1998-03-02 20:25:55
Comments: PRIVATE MESSAGE
Name: Bob Guezuraga
Website:
Referred by: Word of Mouth
From: Woodinville, WA
Time: 1998-03-01 18:06:36
Comments: PRIVATE MESSAGE
Name: Katherine
Website:
Referred by: Just Surfed On In!
From: Indiana
Time: 1998-03-01 00:43:43
Comments: I want you to thank you for creating a wonderful homepage with lots of information about TCS. I am doing a research paper over craniofacial birth defects, and this is among the best pages I have come to yet. I wish you the best of luck in life, and I know you will succed in whatever you do.
Name: Patricia Bryans
Website: Hinckley-Finlayson Home Page
Referred by: Just Surfed On In!
From: Ely, Minnesota
Time: 1998-02-27 14:59:14
Comments: For my Biology class we have to look up 5 different genetic diseases, I was already intrested because my sister has Turner's syndrome and my best friend has a 50-50 chance of getting a genetic disease himself. I'm glad to see how hopeful you are with your disease, I'm showing this to my sister and friend. May your hope give them hope. Thanks.
Name: Ashley Newhaller
Website:
Referred by: Just Surfed On In!
From: Tampa, FL
Time: 1998-02-27 05:24:59
Comments: Thank you for your wonderful page. My best friends just had a baby last week with a severe case of TCS. I want to help them and be there for them. Your site was extremely helpful and informative. I will pass your site on to them. Best wishes to you!
Name: Seth Harris
Website:
Referred by: Net Search
From: kansas city mo
Time: 1998-02-25 16:17:03
Comments: PRIVATE MESSAGE
Name: Don Lawler
Website:
Referred by: Just Surfed On In!
From: Madison, WI
Time: 1998-02-22 22:34:18
Comments: I have a friend with a son who has TCS. Thanks to your bravery I'll be able to pass along some additional info. Thanks much.
Name: Andrea
Website: The Arrow
Referred by: Just Surfed On In!
From: Albuquerque, NM
Time: 1998-02-21 17:42:12
Comments: Thank you for doing this page! I admire your spirit! I have a nephew who may have this syndrome and you made it easy for me to understand a few things about it. I'm a DJ and I wish you lived closer so I could interview you. I do a public service show that gives me an opportunity to educate people of everything from pet care to birth defects. I know that you could help me educate people on things they needlessly fear. So if you ever get to Albuquerque and don't mind being interviewed call me! Thanks again your doing a great job! Andrea
Name: tina nemethy
Website:
Referred by: Net Search
From: buchanan, michigan
Time: 1998-02-19 04:01:11
Comments: PRIVATE MESSAGE
Name: Saralyn Hammock
Website:
Referred by: Just Surfed On In!
From: Valdosta GA
Time: 1998-02-19 02:23:41
Comments: I am a graduate student in Speech Language Pathology and was really pleased to be able to read a first hand account on Treacher Collins rather than the confusing, impersonal medical jargon. I was surfing looking for resources for a "fact sheet" to accompany my presentation and really liked reading your homepage!! Thanks so much!
Name: matthew harvey
Website: na
Referred by: Just Surfed On In!
From: Benton. illinois
Time: 1998-02-18 17:16:59
Comments: its not what is on the outside that counts its whats on the inide that draws you closer!!!!!!!!!
Name: Cherie Jamison
Website: don't have one
Referred by: Just Surfed On In!
From: Quinter, Kansas
Time: 1998-02-17 15:52:53
Comments: Your story is very interesting. I was never aware of TCS untill just now. You are like you are because God made you that way, it's not a totally harable thing! (Is it?) The reason I've read your story is because I am doing a speech about birth defects, this happened to be an interesting one on my lists! I wish you all of the luck in everything you do! Remember to never give up, strive for everthing you've ever wanted! You can do it!
Name: Karen J. Lehman
Website: none yet-working on it
Referred by: Just Surfed On In!
From: SW Washington
Time: 1998-02-11 22:22:02
Comments: You go, girl! I wish you well in everything. I am copying your pages because I teach classes on exceptionality for regular education teachers who need credits to renew their certificates, and also for teachers who want to get into special education. Treacher-Collins is an interest of mine, because I am also hearing impaired, having had multiple surgeries on my right ear. I am quite a bit older than you (45), and they didn't have tubes for the ears when I was growing up. I have a pretty good sized hearing loss in my right ear. I survive better than most, cause my left ear is completely normal. Now that I'm getting older, the nerve part of my right ear is starting to fade, cause of that ol' "if you don't use it, you lose it" deal. I can't wear amplification very often, cause I still get ear infections (now isn't that impressive for my age). I am currently employed as a speech-language therapist in the schools. However, my first (and only) love is hearing, and anything having to do with kids with any kind of hearing difficulties. I knew what T-C was because I've worked with kids with that before. I wish you all the luck in the world. Karen
Name: Theresa Turco
Website:
Referred by: Net Search
From: New York
Time: 1998-02-09 15:38:34
Comments: Thanks. All of a sudden, I feel courageous, like you. :)
Name: Becky Meyer
Website:
Referred by: From Geocities
From: Foresthill, California
Time: 1998-02-09 05:05:59
Comments: Amie, I have a four year old daughter, named Linsey who was born with Treacher Collins. I was just looking for TCS sites and happened on to yours. I really enjoyed your site, as a parent I find that I want to protect my daughter from being teased by other kids. But reading your story about being on the bus and being teased, made me realize that she is very strong and special and that she'll be able to handle herself and become a better person. I would really like to stay in touch with you. If ever you have time, my email address is. My daughter currently has a trach. and I'm really interested in the CPAP that you use. My daughter had a trach for the first year of her life and then pulled it out and we went 2 years without it(It WAS GREAT!). Since her cleft palate surgery last year, we've had the trach replaced. I hope to hear back from you. Many Thanks, Becky Meyer
Name: Paula
Website:
Referred by: Just Surfed On In!
From: Denton, Texas
Time: 1998-02-07 04:44:37
Comments: PRIVATE MESSAGE
Name: Saundra
Website:
Referred by: Net Search
From: Originally from Lompoc, CA (near Santa Barbara). I now live in Fresno, CA.
Time: 1998-02-05 03:24:20
Comments: Wonderful Webpage!!!! I will be meeting a young boy tomorrow who has been diagnosed with Treacher Collins syndrome. I knew absolutely nothing about this syndrome so, of course... I turned to the internet to educate myself a bit. I will also meet his mother and hope that after getting to know her I can share your web page with her. I am sure that she will love it! Really some good information and beautiful pictures. I was feeling a bit nervous to meet them both, especially not knowing too much about this particular syndrome. I am now more at ease and excited for tomorrow to come. Thank you so much.
Name: Joshua Eisenhut
Website:
Referred by: Net Search
From: Deansboro NY
Time: 1998-02-03 00:05:29
Comments: PRIVATE MESSAGE
Name: angele
Website:
Referred by: Just Surfed On In!
From: france and pennsylvania
Time: 1998-01-31 00:35:05
Comments: Thanks Amie. we are the parents of 2 kids. One of them,junior, has TCS. He is 2 and his name is Caleb. We just got a computer and it feels like Ali Baba's cavern. I would have liked to chat with you right away but the computer said that 30 people were on the server. What does that mean? Anyway thank you Amie for this page, you are funny and say hello to your friend Laura. The very best for you. bye bye.
Name: Alex
Website:
Referred by: From Geocities
From: Lewisville, TX
Time: 1998-01-26 09:24:21
Comments: Our neighbor has a 2 year old daughter, Elizabeth, with TC. We have been trying to talk them into getting online so began exploring. Started with your page. It is wonderful!!! Have a special needs child ourselves so we are in the club. There is so much inspiration on your page. Elizabeth is very similar to your condition minus the trach. She is extremely bright and uses the hearing aid. My wife and I are crazy about her even though we have 3 of our own. Keep an eye out for Elizabeth's parents, Mary & Bill Shcade. Once they see your page, they'll be blasted into cyberspace soon. All the best to you. Yours Truly, Alex Buck
Name: Brian Miller
Website: no home page yet--hopefully will have one up soon!
Referred by: Just Surfed On In!
From: A hick-town in North-central Pennsylvania
Time: 1998-01-21 17:25:21
Comments: A great page by a beautiful girl with a truly exceptional personality, and terrific approach to life. Keep up the good work Amie! =)
Name: Lt. Mike Shepard
Website:
Referred by: Just Surfed On In!
From: Forest Lake Police Explorers, Forest Lake, Minnesota
Time: 1998-01-19 23:04:08
Comments: PRIVATE MESSAGE
Name: Ian M Cocoran
Website:
Referred by: Net Search
From: Glasgow. U.K
Time: 1998-01-18 18:05:07
Comments: A great page and a very valuable one!!!
Name: Roberta O'Brien
Website:
Referred by: Net Search
From: Farmington, NY
Time: 1998-01-17 04:59:42
Comments: PRIVATE MESSAGE
Name: denise/samantha/steve deaton
Website:
Referred by: Net Search
From: lexington, tennessee
Time: 1998-01-15 04:16:18
Comments: My daughter Sam and I both have TCS. I found out I had TCS when Sam was born Sept. 30, 1994. my case went undiagnosed for 28 years. awareness in the medical field is just as important as awareness in society. keep up the good work....... DENISE.
Name: Melissa Lake
Website:
Referred by: Just Surfed On In!
From: Michigan
Time: 1998-01-09 00:46:48
Comments: Hey there! My name is Missy and I also have TCS. I would love to write back and forth with you so PLEASE write back! Take Care :)
Name: JAMMIE WARNER
Website:
Referred by: Just Surfed On In!
From: ALABAMA
Time: 1998-01-07 06:07:05
Comments: PRIVATE MESSAGE
Name: Anita Donoho
Website:
Referred by: From Geocities
From:
Time: 1998-01-06 03:19:05
Comments: Hi, I'm a teacher of the Hearing Impaired who happens to have 2 elementary students who have TCS. It was nice to see your web page and that you have not let your "difference " get in your way. I hope that my 2 students will develop along the same path. Good luck with your endeavors. Anita D.
Name: Michael Dusserre
Website:
Referred by: From Geocities
From: Midvale, Utah
Time: 1998-01-05 18:51:31
Comments: Hello Amie, You are a beautiful young girl. Thanks for the page. One of our five children has TC. As you do he speaks very well of himself. He is generous, keen, brave, strong and handsome. Nice family you have. Homework can only make you the best. God Bless You! Michael Dusserre
Name: Amy
Website:
Referred by: Net Search
From: Oregon
Time: 1998-01-02 06:43:30
Comments: This was a great page and gave me a sence that it is ok to be different. I also learned something about, a syndrome that I didn't know about.
Name: Shane
Website:
Referred by: Just Surfed On In!
From:
Time: 1998-01-01 13:52:28
Comments: I liked your page keep up the good works.
Name: suellen brahs
Website:
Referred by: Net Search
From: 13 circle drive hamburg,nj 07419
Time: 1997-12-30 01:56:33
Comments: I ENJOYED READING YOUR WEB PAGE. I TO HAVE A MILD CASE OF TCS I WOULD LIKE TO COMMUICATE WITH YOU AGAIN HOWEVER I DO NOT HAVE A E-MAIL ADDRESS AT THIS TIME
Name: Guenivere
Website:
Referred by: Just Surfed On In!
From: Leonesse
Time: 1997-12-16 20:54:02
Comments: PRIVATE MESSAGE
Name: Nancy Rodriguez
Website:
Referred by: Net Search
From: Plano, Texas
Time: 1997-12-13 23:34:26
Comments: PRIVATE MESSAGE
Name: Fabio
Website:
Referred by: Just Surfed On In!
From: italy
Time: 1997-12-11 19:04:44
Comments: Ciao! I surfed your site again! It's more and more interesting with your update of links regarding the syndrome. I hope everything is going fine with you. I'm SURE about it! :) Just to say hello, Fabio
Name: Elizabeth
Website:
Referred by: Net Search
From:
Time: 1997-12-09 21:47:00
Comments: This gave valuble infornmation for a paper at school. Thanks! Betsy :-)(-:
Name: Hilary Peterson
Website:
Referred by: Just Surfed On In!
From: COnnecticut
Time: 1997-12-09 19:02:00
Comments: Amie This is a great page!! Congratulations on a job well done! Hilary
Name: Aurore Cote
Website:
Referred by: Just Surfed On In!
From: Montreal, Canada
Time: 1997-12-07 20:05:00
Comments: PRIVATE MESSAGE
Name: Julia
Website: Julia's Homepage
Referred by: Word of Mouth
From: Canada
Time: 1997-12-07 17:33:00
Comments: Hallu! Your homepage is very informative. I like it. Come and visit mine sometime. Sign up for the award! It's very easy to win. ~~*JULIA*~~
Name: Mohammed Rajah
Website:
Referred by: Net Search
From: Originally from Mauritius
Time: 1997-12-07 03:50:00
Comments: PRIVATE MESSAGE
Name: Bill & Loretta Veenstra
Website: The Veenstra's
Referred by: Just Surfed On In!
From:
Time: 1997-12-06 14:52:00
Comments: Hi Amie.
You are BEAUTIFUL!!! Beautiful for sharing your disorder with us. You have enlightened us concerning this thing. How beautiful of you to do so. You've touched our heart and love and we love you. God bless you!
Come visit us sometime when you have the time.

The elements for the epicure dancing all over the pages.
Not on faces, nor on heads, just randomly running places.
Through our collections and out of the fold,
into the virtuous pages of gold.

~visit~

Our RECIPE pages!

Name: Tor Ahlenius
Website: Diseases, Disorders and Related Topics
Referred by: Just Surfed On In!
From: Stockholm, SWEDEN
Time: 1997-12-05 13:47:00
Comments: Just wanted you to know that I've included a link to your very useful and informative resource in my collection of disease-oriented links. Hope that's OK with you? If not, please let me know. You'll find the link under the subheading 'Mandibulofacial Dysostosis' on the WWW page located at http://www.mic.ki.se/Diseases/c5.html Maybe this link could help attracting additional visitors to your pages ... Best wishes & Merry X-mas --Tor Ahlenius
Name: Christy Fasanello
Website: in the process of designing one
Referred by: Just Surfed On In!
From: Florida
Time: 1997-12-03 20:35:00
Comments: I emailed you!
Name: Humberto Carlos Torres Valdes
Website:
Referred by: Net Search
From: Mexicali, Baja California, Mexico
Time: 1997-11-17 21:57:00
Comments: PRIVATE MESSAGE
Name: Sharon McNeill
Website:
Referred by: NewsGroups
From: Glen Carbon, IL
Time: 1997-11-12 06:01:00
Comments: PRIVATE MESSAGE
Name: William Rohtert
Website:
Referred by: Net Search
From: Truckee, California
Time: 1997-11-11 16:16:00
Comments: Great Web Page. Made me laugh and cry. I have TCS also and, until tonight, felt very alone in the world. I've used the net in business for years and, finally my wife encouraged me to go looking for friends, and lo and behold. This new stuff is a powerful thing. All the best to all of us.
Name: Ronn Kelly
Website:
Referred by: Just Surfed On In!
From: Boston, MA
Time: 1997-11-09 03:30:00
Comments: I have a sister that just gave birth to twin boys. One of the boys has been diagnosed with TCS. We, like most others, had never heard of TCS. We have now, thanks to the web and your website. You've done a great job putting your page together and helping to familiarize folks like myself with TCS. For that we say thanks, and maybe we too, can better educate ourselves and other on TCS. Thanks !!!!!
Name: Krispy
Website: WHERE ARE U?
Referred by: Word of Mouth
From: Hmmmm good ?
Time: 1997-11-08 07:49:00
Comments: PRIVATE MESSAGE
Name: Robin lander
Website:
Referred by: From LinkExchange
From: Hampton , Va 23663
Time: 1997-11-08 00:59:00
Comments: I have a older brother and younger sister that have TCS. I am not affected, but would like to hear from any siblings that were middle childern and wernt affected by TCS. although we dont have TCS we also are mentaly affected,because we love people that have TCS.
Name: Christa Lynn Albright
Website:
Referred by: Word of Mouth
From: Sugar Land
Time: 1997-11-05 02:27:00
Comments: Amie, your homepage made me cry. All of it is so true. Laura never lets me read any of her writings, although I always knew they were good, so it was an experience for me to read Laura's essay. I too wish peoplw weren't so afraid of what they don't know. If I don't know about something, I try to find out. I think you are a truely unique person, with a heart of gold, and courage of steel. Love you always, Laura's little sis Chris
Name: George Lang
Website:
Referred by: Just Surfed On In!
From: Fairfield, CT
Time: 1997-10-31 19:32:00
Comments: Very nice page. Not sure how I got to this page,