The Treacher Collins Family Support Group Forum

Welcome to the Treacher Collins Family Support Group Forum.

The Forum is here for TC Families, Individuals, Professionals or anyone who has an interest in Treacher Collins Syndrome to contact others.

Please use it wisely as it will be monitored and removed if used otherwise!

Hello to everyone in this forum.

by

Hi everyone,
My Name is shari, I live in Australia, and I have mild TCS, only diognosed under xrays, otherwise not seen. I have three children with TCS, who are more severe, all suffer from the typical facial anomlies, though they do have ears that are aided with the current hearing aide facilities. The Older two have had many operations already to correct the eye area, and The eldest has had the jaw surgery, most successful too. The youngest suffered comlications unrelated of Kidney disorder, and has had a Transplant 3 years ago. I would be please to meet anyone who feels alone with this, and to share mutual feelings, swap knowledge etc.I have put in a couple of postings already, but thought to follow up with this letter. Hope to hear from anyone who wants to chat, swap photos,info, support. Love to all
Shari.

Posted on Jan 8, 2001, 9:50 PM

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hello to sheri (australia)

by robert

hi sheri first time on a computer i am 37 and have tcs i live in england uk cant beleive how many there are of us cannot give you e mail address dont know how to at the moment good to know i am not alone?

Posted on Jul 18, 2001, 2:38 PM

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Hi Robert

by

Hi Robert, thanks for responding to my message. Goodnesss it is quite a while since I put it in there and you know I had lost the bookmark to get back into this forum. Well now i have it back again, thanks to you. So you live in England huh! Yes My family a few generations back come from Wales. I'd love to come to your country, as my roots are from there, but you know its near on impossible with all the responsibilities that one has with Kids n all. So you are 37, well thats only a couple years shy of me, I turned 40 not long ago No big deal, I quite like it. I would be quite happy for you to write to me at my private address if you wish to, thats included. I m not so pleased with myself at the moment, as I missed an appointment with the Cranio team here, for a planning meeting, for my son, which I am sure I will get a rap on the knuckles for :P These top dog surgeons dont appreciate being mucked around do they. Well I cant be feeling too bad I suppose, as we have six screeching sproggs in this house, and its a wonder I remember anything.

Write and tell me about yourself, Mate, as we all say here n OZ be good to hear from you.

Take care Robert
Shari

Posted on Jul 18, 2001, 10:45 PM

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shari

by

well shari i saw your message and was amazed you are the first person to chat to me on a computer being a new comer to this computer world. it sounds like you have your hands full with 6 kids i have no children of my own but my wife has 3/ 2 girls 1 boy only the boy lives with us he has just left school he is 16 years old and now looking for work. my wifes name is helen weve been married for 2 years on dec 24. i am a truck driver for a garbage firm. we are both looking forward to our vacation we are going to the canarie islands for 2 weeks. is it you that has tcs or your children?. i hope to be able to send you a photo soon but still learning how to do things whith a computer if you can send me one i would love to see who i am talking to. how do you send images do you know?. where in oz do you live. talk to you soon ROB.

Posted on Jul 23, 2001, 11:43 AM

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Glad to know you are all here.

by

My great nephew was born in October with TCS and Pierre Robin Sequence as well as Nagers.

I received a copy of a posting from the internet from a friend of mine. It was written by a lady named Kelly and her son's name is Ryan. I would love to be able to make contact with her. Her Christmas letter blessed my soul.

If she is in this network, please respond to my email address.

When my neice gets home from the Childrens Hospital we will both coming more and more into your network.

Kathy Runyon

Posted on Dec 8, 2000, 9:37 AM

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need info

by caleb downing

Please sent me info about treacher collins syndrome. Give me info at

Bourbon Co. Middle School
C/O Gozy/Downing
3343 Lexington Rd.
Paris, Ky 40361

send me papers about it I would like to know about it please send me soon thanks

caleb d


Posted on Nov 6, 2000, 8:44 AM

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hello

by

hi, i work with a child with tcs. he's an angel. i wanted to do research before i worked with him, try http://www.users.fast.net/~pauld/tcsqa.htm
good luck!

Posted on Nov 11, 2000, 2:09 PM

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My son, David, age 16, has TCS. Kansas City area

by

David was diagnosed at age three with CHARGE Syndrome. Fourteen surgeries later, rediagnosed with TCS at age 15. What a difference in diagnosis! Anyone who would like to communicate about struggles and triumphs can feel free to email me!

Posted on Nov 5, 2000, 6:55 PM

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Responding to your message: From Australia

by

Hi,
I have ust recently gotten into this support forum, after battling alone with 3 children all with TCS, the eldest is nearly 18, then I have a son who is 14, and another son 11. The oldest two have both had extensive surgery, to reconstruct their faces.This has been done here in Adelaide by Mr David David, and his team in the AMCWC. My Daughter two years ago had her jaw done and is only now in need of cosmetics around the eyes. All three still have the hearing loss and respond well to hearing aids due to conductive loss. I have a huge repitoire of stories to tell, and would be really interested in communicating with you. Thanks for the offer. It has been a very long an lonely 18 years. as you would know the communtity at large does not vie these children with a great deal of compassion and or interest. We are very isolated socially.

Your sincerely
Shari.

Posted on Jan 8, 2001, 9:19 PM

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our children

by

I'm a single mom with a four year old. I would love to hear some your experiences.

Posted on Jan 9, 2001, 1:27 AM

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HELP!

by

Hey dudes. I am doing a report at school on stuff like this. Can someone e me and tell me about this syndrome?

Posted on Nov 5, 2000, 12:42 PM

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Untitled

by it

i know your name is jennifer g.





Posted on Nov 6, 2000, 10:03 AM

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Info

by

I"m a student and are studying about Genetic Disorders. I decided to research TC. If anyone has info about it please email it to me

Thank you

Posted on Nov 4, 2000, 11:04 AM

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isn't that odd....

by

I am too. May I ask you to tell me what school you do to? Will you e me? Because I am doing a report too.

Posted on Nov 5, 2000, 12:44 PM

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Report

by

I am from Johnstown High school. I just started doing this like 3 days ago, but I got very interested in it.

Posted on Dec 6, 2000, 8:41 AM

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Untitled

by

TC is a genetic disorder were the face isn't fully developed also known to have "no ears"

Posted on Nov 6, 2000, 8:48 AM

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child with tcs

by

would like to hear from families of children with treacher collins

Posted on Oct 4, 2000, 12:53 PM

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Family with T.C.S.

by

I am just now starting to research T.C.S. One of my daughters and I have T.C.S. I never knew why I was different until 14 years ago when my nephew was born, the doctors were suspicious on how Nathan looked when he was born. My brother and his wife researched and counseled on T.C.S. after
they were told that is what their son had.

It comes from my mother's side of the family and I had four brothers, 2 of them have it and a sister who does not have it. So 3 out of 6 of us children has T.C.S. I have two daughters and my oldest (now 12 year old) daughter has a mild case. I consider myself having a moderate degree of T.C.S.

I would like to correspond with others on how they cope with T.C.S. and the rude public. Also, correspond with anyone who has undergone reconstructive surgery on the jawline.

I am 37 years old and wear a hearing aid (in the ear type). I have not corrected my mouth/teeth in anyway or done any other reconstruction.

My daughter wears normal behind the ear hearing aids. She is currently undergoing corrective mouth/teeth procedures by wearing appliances and braces. No surgery at this time.

I feel our worst hardship with having T.C.S. is dealing with the public and their rude comments, laughs and stares.

Comment please.

Posted on Oct 11, 2000, 9:11 AM

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Agreed!

by

I agree whole heartedly that the public can be the hardest part of TCS. I am 21 with a 1 year old son we both have TCS. My son is the fifth generation with TCS.
I found it amusing that three out of six children got TCS because the chane of passing it on to a child is exactly 50/50. Hope you might want to talk some time.

Posted on Dec 26, 2000, 5:32 AM

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agreed

by

this is off the subject,but, My daughter Angelica has tcs. I'm just wondering "Rebeca's brothers and sister all look pretty much alike because of the tcs? or can one see the similarities simply because you're all related? The reason I'm asking is because we attended John Tracy Clinic for a few months, and met a little girl with tcs,who's birthday was only a few days away from my daughter's (I thought that alone was a great coincidence) but they could honestly pass as twins.

Posted on Jan 9, 2001, 1:07 AM

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Regarding your Coping with rude public.

by

Oh Sweetie do i ever feel for you on this. I have just hooked into this forum, and had no idea it was even around, but am i ever glad. I have probably the mildest case of TCS, and it was only made known to me as i had extensive xrays and was found to have clefts in the mandible(jaw) but this wasnt done until after the birth of my first two children, who have quite pronounced TCS. M 18 Year old daughter has had the aw operation, along with many other bone grafts to facial clefts over the course of the last 12 years. If you would like to write to her personally, she can tell you first hand what the operations are like. froggy_baby20@hotmail.com is where she can be reached if you would like. Her name is Erinna.

We understand fully about the public and their rude remarks, stares, deductions etc, over the last 18 years i cannot recall a comment not being made, Ive heard them all, and grieved a great deal. I have never had family support, as I emigrated to Australia from NZ in 1979, before i knew of this condition, within myself. It wasnt till 83 when Erinna was born it was revealed to me. My parents dont appear to have any anomolies, and are too far away to be a support even so. We have borne up under this, both as a single parent family, and more recently since my remarriage, with a husband and stepdad. Quite miraculously my Husband and i had three children, born with no TCS.

I would and we would be happy to hear from you. Their is so little contact with other ppl available here, as Hospital staff dont divulge information. One thing I can say though, this hospital here, and the maxillo foundation is a world leader, under Mr David David. A life saver for Erinna who was on a CPAP machine for years, before the jaw was done. There is much more to say, and I would be so grateful for your communication, its one thing to have good surgeons and plenty of knowledge, but it is another to have contact with others who Truly understand.

Yours Sincerely
Shari.

Posted on Jan 8, 2001, 9:37 PM

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Untitled

by

Hi! I just wanted to ask if you knew of another site where there are a lot of families with TCS also adults with tcs. You have to go to egroups and then choose Treacher Collins.

I have a 4.5 year old son with tcs. His name is Anant. I have a daughter Rhea who does not have tcs. We are from India but Anant was born when we were in England. Now we stay abroad because it is difficult to manage in India.

I too find it very hard to deal with the stares and talking. Some people assume that I do not understand English and would carry on a discussion about Anant right in my face. When Anant was just a baby, we were on a British Airways flight and two men who were sitting across from us started talking. One of them said " Isn't this the ugliest baby you have ever seen". I almost choked with tears.

People are so ignorant. I think that the media should raise more awareness regarding various conditions. Well, I am sure my son will grow up to have more sense than those men and will be a better human being. Isn't that what counts in the end?


Posted on Jan 23, 2001, 9:06 PM

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The *other* TCS forum

by

Hi Rekha,

I just happened to see you here and wanted to say Hi. I wish you would bring this story of the plane and the men up ... on our site. Oh my gosh, what a reaction you would get from all of us. That is so unbelievable and I'm so sorry that you had to endure that. Thank you for telling everyone about the other forum and to make it easy .. I'll list the address here:
http://groups.yahoo.com/group/treacher

See you on the other site,
Judy


Posted on Feb 1, 2001, 9:27 PM

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questions

by Katie Spalding

Shari, I have only read a few of your responses and already I have learned a lot about TCS. I have a cousin who has this and the family knows very little about it. I myself and in nursing school and have taken a particular interest in learning more on the subject. I was wandering what exactly the new aw operation is and what is a CPAP machine?

Posted on Aug 22, 2001, 12:16 PM

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TCS

by

I'm 49 years old. How to deal with the public stares? It depends on the day and my mood. Sometimes I'm angry, sometimes I smile.

I want to write more but...

I look back and realize that I needed to not feel hurt and angry.... and not try to make it uncomfortable for mom, dad, et.al.

I want so much to communicate with others who understand this... I"m succesful but full of hurt...

John



Posted on Jan 17, 2001, 10:19 PM

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t.c.s.

by

I'm a parent with a child that has t.c.s.. She's 4yrs. old and had the jaw surgery done . It made a world of difference in her life. She had the trach taken out and feeding tube out for a yaer now. She enjoys going to school and playing with two other sisters.

Posted on Jul 26, 2001, 4:13 PM

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grandaughter

by

my grandaughter was born with tcs on May 13,1992. The entire family was in shock.The doctors are noone at the hospital had any knowledge of what Brianna had. We finally got a doctor that was 99% sure she had tcs.She has had two surgery on her ears.IT HAS BEEN A WILD RIDE THE LAST EIGHT YEARS.I have always been so worry about how she'll handle her teens.Brianna has been so protected by the whole family.

Posted on Dec 25, 2000, 1:05 PM

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Teenagers

by

I think the most important thing for Brianna when she gets to her teens is to be allowed to vent her anger and fustration freely. because there will be plenty of both. I am 21 with TCS. Maybe you could try hooking her up with other children her age who also have TCS on the internet and let her start talking and understanding that their are heeps of us out here ine the world who know what living with TCS is like. That may help her now and when she is older.

Posted on Dec 26, 2000, 5:38 AM

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Son with TCS

by

Hi, I have a son with TCS. he is 13 months old. I am almost what you call an expert on TCS, as it has been in our family for five generations. If you would like to talk or want info then please feel free to write back.

Posted on Dec 26, 2000, 5:06 AM

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17 year old son with TCS

by

Rebecca,
My son, David, 17 in two weeks, was diagnosed with TCS last summer. Geez!!! We had been told since age 3 that he had CHARGE Syndrome. What a difference in diagnosis! With CHARGE, kids seldom live to adulthood. With TCS, from what I can gather (and that's not much!), if kids make it out of toddler-hood, they grow into adulthood.
David has had two reconstructive ear surgeries, and twelve other surgeries for other things. Some major and some minor. He is a sophomore in high school, in a Lifeskills program. He has a 60 IQ, is nearly deaf in his left ear and has a significant loss in his right. He prefers not to wear his hearing aide, and has done well compensating...looking at people's mouths when they talk, etc. He is almost always in a good mood, loves Ninendo and Gameboy and Computer. He is an absolute joy to me.
No one in my family has every had anything like this syndrome. I would very much appreciate anything that you can tell me. Even our genetics department at the Children's hospital here does not have much info.
Thanks for contacting me when you have time. Please put TCS in the subject line of your email so I don't mistake it for "junk" mail.
Thanks.
Susan Croskey
Olathe, KS
USA


Posted on Jan 8, 2001, 5:13 PM

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TCS

by

Hi Susan,
WOW, Your story has just shocked me. It is quite common for TCS to be missdiagnosed but normally with Golden Hars syndrome. I don't know much about Charge Syndrome, But for your family to have lived most of your lives thinking David would die at a young age must have been hell.
Caleb my 15 month old son is fifth generation with TCS. all up that is seven that have it and possibly more that were never diagnosed. My GreatGrandmother had it. My Pop (We don't know if their brothewrs or sisters had it, or if my great grandmothers parents had it) My pop and Nan Had 2 with TCS & 2 without. My parents had 2 with & 1 without. And last is Caleb.
As you can see TCS passes through the genes. It is a dominant gene which means that if one parent has it and the other doesn't then there is a 50% chance the children will have it.
Treacher Collins it's self doesn't give an intelectual impairment most with TCS are of high intellegence. But there is just as much chance of having an intelectual impairment as any one else in the world.
There are totem poles by the Inca's With the carved heads of people with TCS and they were regarded by the Inca's as Gods. So TCS dates back a long way, and as I see it means that TCS will be around as long as the human race exists.
That's a few little Facts I thought you might like to know.
So Yes TCS people live full happy lives, I can't say there normal lives because of all the different medical problems that are associated with it.
Some of them are:
Microtia (no ears)
Cleft Palate (Missing roof of mouth)
Small Jaw (Can result in Tracheostomy)
Missing bottom eye lids
Missing tear ducts
Slanting eye's
Missing Cheek bones.
Caleb Got all of the above. I got all but the Microtia, Cleft Palate, Tracheostomy.
I hope you will write again and ask any questions or just chat.
Rebecca
Sydney Australia

Posted on Jan 25, 2001, 2:36 AM

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daughter with TCS

by

Hi

I have a daughter with TC she is only 8 years old and has already gone through a lot. She is a beautiful little girl and is coping very well. I have 3 other children (none of which has TC) have you tried contacting the family support group?

Goodbye

Gail

Posted on Jul 10, 2001, 2:56 PM

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TCS QUESTIONS!!

by Anonymous

I was wondering if TCS is passed through DNA? Can you tell if your child has TCS before he or she is born? Is the father most likey to pass it through his DNA even if there is no sign of it in his family? How can you tell if TCS is in your DNA? I have so many questions regarding this issue any info would be helpful. Thank you!

Posted on Oct 3, 2000, 11:23 AM

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respond to tcs questions

by

Hi! I have a 4 year old son with TCS. I have done a lot of reading on this but lack of time makes it difficult to write all the things.

You will find a lot of information in the paper written by Dr. Mike Dixon. He is from Manchester in England and is the first person to have located the gene that causes the defect. It is an autosomal dominant gene and has a 50% chance of being passed on. In more than half the cases it is a new mutant as in the case of my son. This means that there is no indication that there is any history of tcs in either my or my husbands family. But Anant will have a 50% chance of passing it to his offsprings.

The DNA testing is available but not all tcs cases will have that particular gene present. Also testing the foetus is only possible in cases where there is a history of tcs in the family and the gene has already been located in either of the parents. It is not very straightforward and still in research stage. Testing is done by Prof. Dixon, but depends on the grants.

There is nothing proven to suggest whether the father passes on the gene. Though it has been suggested that increased paternal age might be one of the factors.

During my second pregnancy a lot of tests were done but there is no test that can rule out or confirm tcs antenatally. Till the child is born you cannot be 100% sure that it will not have tcs even though the chances of our having a baby with tcs the second time were very low. My second child is a girl and she does not have tcs. In case you have specific questions please do let me know.

Posted on Oct 3, 2000, 9:41 PM

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Thank you!

by Anonymous

Thank you very much for the information. It was very helpful to me.

Posted on Oct 4, 2000, 8:52 AM

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TCS passes on.

by

You must have TCS to be able to pass it on. If neither parents have TCS but the child is born with TCS Then it is a sporadic case of TCS. Which means that the problem started with the childs genes not the parents.

Posted on Dec 26, 2000, 5:19 AM

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Support in Northern CA

by

Hi all,

I'm a grad. student at Sacramento State University California studying in the field of Special Education. I'd like to find a support group that I can recommend to families that I come into contact with who have children who have TC.... Anyone know of any?

Thanks for your help.

Posted on Oct 1, 2000, 3:54 PM

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Message.

by

I have never heard of one in my whole 21 years of living with TCS. I would just suggest the internet. I don't quite understand your interest in TCS. As there is no reason for a Child with TCS to be in a Special Ed class?

Posted on Dec 26, 2000, 5:23 AM

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TCS questions

by Anonymous

Is TCS passed through DNA? Can you tell if the chid has TCS before he or she is born? Is TCS more likely to be passed down from the father?

Posted on Sep 29, 2000, 10:56 AM

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Answers

by

Yes you can find out if your child has TCS before they are born. I had what is called an amnioscentises when I was 10 weeks pregnant. Only it is important that doctors know where the problem lies in the person carrying TCS. No it is no passed down depending on sex orientation. Weather the adult is male or female there is a 50% chance that the child will be born with TCS. If you want more info on either of these please feel free to ask.

Posted on Dec 26, 2000, 5:15 AM

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