TCS Connection

Name: Carin
Date: April 7, 1999
Location:  Oregon
Subject:  Can't thank you enough
Isn't it amazing how a lack of information and support can make you feel isolated and in the dark? I can't thank you enough, Amie, for this marvelous site. It is truly a ray of light! I can honestly say that in my 26 years, I've not had any supportive, in-depth, and enlightening information about this condition. If others were to ask what was so different about me-I didn't have the knowledge to explain to them-only that it was somehow not okay. Reading your accounts and experiences-I am struck by the similarities in all of our lives (I too am horse crazy)! What a wonderful sense of belonging and understanding! Like others, I have questions-because this has been my first opportunity to communicate with others who have similar experiences, I'll try not to bombard you! Perhaps most paramount at this time is whether or not to have children. Due to be married in October-a family of our own is being considered. Any thoughts/info? My heartfelt gratitude!

Name: Shelly Schabel
Date: April 26, 1999
Location:  Blue Springs, missouri
Subject:  I have TCS
Hi, i am a person with tcs can i help anyone?

Name: Pam Sprenger
Date: April 6, 1999
Location:  California
Subject:  Baby with TCS
I was just offered a baby with TCS for adoption. I am eager to learn as much as I can about this syndrome and all the surgeries and outcomes from them. Are they worth it? I have not seen the baby, she is 4 months, so I just want to learn as much as I can so I will not be overwhelmed. Thank you.

Name: Peter & Jenny Edwards
Date: April 2, 1999
Location:  Gympie, Australia
Subject:  Our daughter Brittany age 3 with TCS
Dear Amie, we are from Australia and as we have no support group here, we are wanting to get into contact with anybody who would like to get in contact with us.

Name: Candice Prymak
Date: March 22, 1999
Location:  Vegreville, Ab Canada
Subject:  TCS Teen
I would like to contact other teens or young adults who have TCS. I have a B.A.H.A. hearing aide implant and am presently having facial reconstruction surgery. I am 17 years old in Grade 11.

Name: Monica Williams
Date: March 16, 1999
Location:  Oregon
Hi, my name is Monica Williams and I am doing a report for school on TCS and would like to know more info on it. If any one could please write to me with info that would be great. I appreciate you taking the time to read this. May god bless you all.

Name: Ramona Prymak
Date: March 5, 1999
Location:  Alberta Canada
Subject:  TCS
My 17 year old is 3rd generation TCS. We would like to network with people who have TCS. She has undergone some cheek reconstruction and will be going in April for more. We would like to research the jaw surgeries and just talk with people about TCS.

Name: George Kukahiko
Date: February 19, 1999
Location:  Seattle Washington
Subject:  Just a little info
My sister who had TCS just passed away a short while ago and she left a daugther behind with TCS, we all know that we have a lone way to go with her and would like any information that she could understand, she is 9 years old

Name: Mitchell
Date: November 17, 1998
i want to learn more info on tcs so send me info please

Name: Deb Walter
Date: November 1, 1998
Location: Elk Grove, CA
Subject: Our grandson, Sean, three years old, has TCS
I would like to garner information on surgery procedures that our grandson will undergo to correct his features. He is scheduled for jaw augumentation in December 1998. He has not had too terrible time so far but we are anxious as this surgery approaches. We would like to learn more from people who have been through this. On a more personal note, Amy, I worked with your cousin Holly's husband, Michael Carlson, in Sacramento and they had given me your address to get in touch with but had never done so. I had been shown pictures of you and found you to be a beautiful young lady with incredibly beautiful hair. I always wanted to reach out to you but didn't have the courage or want to let down the defenses but with this surgery facing us I got into the net to look up info and was so surprised to find your web page. Please get in touch as you can and I already feel as if I know you.....Deb Walter

Name: M.A.
Date: October 30, 1998
Location: Lebanon
Subject: TCS
Need to speak to a Professor in the US regarding TCS. Can you recommend one. Best Regards

Name: Garrett Langford
Date: October 18, 1998
Location: College Station
Subject: TCS
I'm 21 and have TCS, and would like to contact other people with TCS about their experinces and problems. Thanks Amie for setting this web page!

Name: Tiffany Elswick-Haney
Date: September 28, 1998
Location: Ashland, KY
Subject: Pregnancy
I'm 28 and have TCS. My husband and I are in the process of trying to decide wheather or not to have a child. We both have a Masters Degree in Social Work and both work as therapist in a local mental health center. We help people everyday with their decisions and problems and are unable to help ourselves with this one. I want a child!! But I'm having a hard time trying to decide if I want to knowing inflict this defect upon an innocent child. My parents are not affected or my brother. I was the lucky one, a "new mutant" as the Dr.s have called it. Having a child was never a consideration until the last two years of my life. I'm really scared and I'm seeking any help with my decision you have to offer!! I've had multiple surgerys and on a scale from 1 to 10 I was rated a 5. I'm ok! I just don't know if I want to risk a 10 for a child who doesn't have a choice yet... I know about the 50% chance, but does TCS get worse with every generation????????????? Please help! Tiffany~

Name: Connie
Date: September 17, 1998
Location: Washington, DC suburbs
Subject: Greetings!
Hi to all! I just discovered Amie's wonderful page today and want to say hello.... I have lived with Treacher Collins all of my 53 years, and it's been "real!" I've never let it stop me from doing what I wanted or going where I wanted. I am a professional librarian and amateur photographer who also likes to spend (much) time on the computer! This is a great resource for sharing information and for knowing that we're not alone out here...

Name: Sandi Coffey
Date: August 28, 1998
Location: Kansas
Subject: Treacher-Collins
Our granddaughter was born 8-25-98 with TC and we don't know enough about it yet and and all help and information will be helpful. Thanks Amie for the Web page!!! Gob Bless

Name: Andrea Wingard
Date: August 26, 1998
Location: Grand Rapids, MI
Subject: paper on tcs
I discovered and became very interested in tcs through Amie's page. I am now writting a college research paper on it for my major. I am wondering if anyone has any information they could send me or direct me somewhere that I could find some. I am having a difficult time locating readily available information on tcs. Thanks for such a great page and your help!

Name: Tomas E Lambertus
Date: May 2, 1998
Location: Santo Domingo. Dominican Republic
Subject: TCS patient
I will have a patient with TCS that is going to be operate, she needs a surgery on her eye. I will apreciate a lot, information about TCS and anesthesia. Thanks a lot, from Dominican Republic.

Name: Carina Salin
Date: April 30, 1998
Location: the Aland Islands
Subject: My self
Hello!
I'm a 20-year old girl, that have TCS my self, i'd like to get contact with people that have TCS and hear about their experiences!
Sorry my bad english!

Name: april henry
Date: April 27, 1998
Location: new holland, pa
Subject: tcs-for my friend
please contact me in regards to some info on tcs. My niece allison age 13, has this, she would like to talk to some people who have it and has possibly had some surgery because she is considering it. She does not have a computer so she can not email anything but we can try to help her out in any way possible. she was born without bones under the eyes and has had surgery for this. please contact me at the above address if you would be interested in talking to her i know she would appreciate it. thank-you!

Name: Angele Surault
Date: April 20, 1998
Location: Jenkintown,PA
Subject: TC meeting
Hello! I am trying to get some families together to share experiences and informations about surgeries, speech, feeding, local resources... I have contacted some families but would like to hear from more in the Philadelphia area. Hope to hear from you. Angele.

Name: Paul de Vries
Date: March 21, 1998
Location: Bethlehem, PA
Subject: Person with TCS
I have TCS and my wife and I are considering having our own baby and are currently involved in a very difficult decision process concerning the risks associated with a high risk pregnancy.

Name: Ron Richards
Date: March 20, 1998
Location: Chicago
Subject: My experience
I am lifted in spirit by reading all these wonderful things about people touched by TCS. I am 32 years old, and I have fought a lot of obstacles, but they have molded me into who I am today. The hearing aid can be a bummer sometimes, but I don't mind. We are strong, we are very bright, and we are successful. Self image belies physical image. We can and do have successful relationships with the opposite sex and we have the capacity to accept others as they are because of our own experiences. We have learned not to judge, and I find that in my realtionships and friendships that is what others value most in me. RLR

Name: Mimi Anouchy
Date: February 25, 1998
Location: Jerusalem Israel
Subject: Adopting a child with TCS
My son Jonathan is now 4. He has been with us since the age of 1.5. Jonathan will have to learn to cope both with the physical and social problems arising from TCS and with the fact that he was abandoned at birth. I would love to hear from anyone with a similar experience.

Name: tina nemethy
Date: February 18, 1998
Location: buchanan, MI
Subject: we have tcs
i am interested in contact with people who have young adult children with tcs and who also have hearing impairment. my father was also born with cleft pallet. we are in the process of searching a cranial facial team. please write god bless us all.

Name: amanda enoch
Date: February 14, 1998
Location: franklin, tn
Subject: info on tcs
I am looking for info on tcs for a college research paper. I have tried to find journals, books, or anything with referrences, but I'm at a standstill. This page was wonderful and informative.

Name: Kimberly DeRoner
Date: January 20, 1998
Location: Allentown, PA
Subject: TCS
I am a 27 year old female with TCS. The internet never ceases to surprise me with what I will find. It was just dumb luck that I typed in Treacher Collins & found all this info. I didn't even know the extend of Treacher Collins until I pulled up Amie's Page (THANKS AMIE!!!) If anyone would like to chat, please feel free but please remember the address mentioned is my work & I don't have access to a PC everyday so please be patient.
Take Care! Kimb

Name: William
Date: January 5, 1998
Location: Truckee, California
Subject: TCS
Greetings to New Friends on the Net.
I am sure I speak for many when I express my gratitude to Amie for constructing this website. I am an adult male 44 years of age born with TCS, and am available to individuals or organizations that might seek additional information on life and lifestyle with the syndrome.
I am heartened by the attention placed on the medical care of children and surely support any reasonable measure at reconstruction. I also suggest to adult caregivers and health care professionals that it is never to early to emphasize the important role of developing self-esteem for living a healthy life with TCS. For me, it has been far more important than any one of the many surgeries.
It is a noble desire to inform others of this condition and, perhaps, with education, attitudes within the public may change and discrimination of all types may diminish. It is far more important that each individual with TCS develops a good image of themselves, and learns to love and be thankful for the body they have been blessed to live with.
All the best..

Name: suellen brahs
Date: January 5, 1998
Location: hamburg, nj
Subject: tcs
I have TCS, I would like to meet and talk to other people that also have TCS.

Name: RCB
Date: December 23, 1997
Subject: Respite care
Seeking ideas for providing respite care for family with baby born with Treacher Collins.

Name: ROBIN LANDER
Date: December 19, 1997
Location: HAMPTON ,VA
Subject: TCS
HI , MY NAME IS ROBIN I AM THE MIDDLE CHILD THAT DOES NOT HAVE TCS, BUT BOTH MY OLDER BROTHER AND YOUNGER SISTER DO. I ALWAYS WONDER HOW MANY MIDDLE OR SECOND CHILDREN OR OUT THERE THAT WERE IN THE SAME SITUATION AS ME . YOU FEEL GUILTY BECAUSE YOU DONT HAVE IT AND I KNOW FOR PEOPLE THAT HAVE TCS YOU DONT BELIEVE THIS BUT IT IS TRUE YOU HURT RIGHT ALONG WITH YOUR BROTHER OR SISTER THEY MIGHT BY TEASING AT THAT TIME. AND I GOT IN LOTS OF FIGHTS OVER WHAT PEOPLE HAVE HAD TO SAY ABOUT THEM,YOU SEE MOST PEOPLE DONT CONNECT ME WITH MY BROTHER OR SISTER BECAUSE I DONT LOOK LIKE THEY DO . BUT I AM HERE TO TELL YOU MY BROTHER AND SISTER OR THE MOST BEAUTIFUL AND CONSIDERATE PEOPLE I HAVE EVER KNOWN.I HOPE WITH AMIE'S PAGE PEOPLE LEARN A LITTLE MORE ABOUT TREACHER COLLINS SYNDROME. THANK YOU AMIE.

Name: Franny
Date: December 15, 1997
Location: connecticut
Subject: 9 yr. old son with tcs
My son is being considered for surgery to extend his lower jaw. I would like to talk to someone who has delt with this situation.

Name: Aurore Cote
Date: December 6, 1997
Location: Montreal
Subject: breathing problems
I will like to know if you have ever met somebody with Treacher Collins who needs a special machine to breathe at night. Thanks