========================================================================= Date: Thu, 2 Jan 1997 18:07:34 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Donald A. Sears" <CatnDon@AOL.COM> Subject: Happy New Year!

Happy new year and happy anniversary to Teeter's Page. We've done a major rework of the page, and we need your help.

Please review as many sections of the new page as you can, but your section at a minimum, and report any errors, problems, or innacuracies back to me ASAP.

We've moved the page to a new, easier address, so update your links and bookmarks:

http://members.aol.com/catndon

is all you need now. There's lots of new things to see, so pay a visit to the page as soon as you can. ALSO, I know there are some of you who are not yet on the page. If so, it's only because I don't know you want to be there. PLEASE get back to me with your desire and your permission, and I'll get you in the very next update, hopefully very soon.

Now I know all you parents out there will want to replace MY smiley face with YOUR smiley faces - send me your pictures, by mail or email!!!

Thanks - hope to hear from you soon.

Don ========================================================================= Date: Thu, 2 Jan 1997 20:25:39 -0700 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Patricia Bacon <baconptf@TELUSPLANET.NET> Subject: Teeter's Page Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Don, Cathie and Teeter! Wow. You've got some powerful stuff there. I am hoping to get up a page for our Alberta Cleft Palate/Craniofacial Foundation soon, and have been studying yours as a piece of excellent work.

Well done, sir! Pat Bacon, Calgary ========================================================================= Date: Fri, 3 Jan 1997 11:26:47 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: George Starr <daystar@IGLOU.COM> Subject: Re: Happy New Year! MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

The new page looks GREAT! I love the new pictures of Teeter! George ========================================================================= Date: Sat, 4 Jan 1997 04:42:27 -0600 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: age Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

My name is Denise Graham and my son Daryl is 10 month old with aperts. I was wondering if there is any other mothers out there that their first child was born with aperts and are young. I was 23 when I had Daryl and he is my first born child. I love him dearly and hope to one day have other children. Not soon because I want to get him through these first tough years. I would like to talk to some of you who might have some of the same fears as I do. With Daryl being my first, and after having a miscarriage a year before him, I fear of having another unhealthy child. Never having one ahead of him gives me no proof that it is possible in my case. I know this sounds silly, but in my mind that is what I feel. When I say unhealthy I am talking about Aperts, but mainly I am worried about other problems. Daryl was born with pulmonary hypertension that was totally seperate from the aperts. His apgar after one minute was 1. He only had a heart beat. I feel good about the less than 1% chance of having another aperts child. Like many of you that is still a concern in the back of my mind, but my biggest fear is other deadly problems. I sometimes feel that there could be something wrong with me, and I don't want to have a baby in the future that may die or suffer because of it. I wish there was some way I could be tested to see if there is something wrong. This all probably sounds silly and overcautious, but the fear is still there. I would still like to hear from anyone who has some input on this subject, but I would really like to talk to someone close to my age who has experienced this same situation. I'm not calling any of you old, but I have yet to find anyone else around my age who has an aperts child. Please don't think I have no faith. I trust God and he will guide me through this as he has everything else. Whatever his purpose for Daryl and any other children I have will be welcome, but I still would like to find someone having felt this same feeling. Well...thanks for listening. You all have been very good to me and been there for support. I need all of you!

Denise Graham ========================================================================= Date: Sat, 4 Jan 1997 18:12:01 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jonathan Gentz <IrsNav@AOL.COM> Subject: Re: age

Dear Denise, Chad and Daryl

My name is Ann Gentz and I have a son named Jonathan who was also born with Apert's Syndrome. He is 7 months old-his birthday is May 23,1996. My husband Jeff and I were both 27 years old at the time. We also experienced a miscarriage with our first pregnancy. We do have a beautiful, healthy and perfectly normal little 3 year old girl named Rachel. Jonathan doesn't have any health problems other than Apert's and is going through the standard Apert surgeries. At 3 months he had surgery to release the prematurely fused sutures (coronal in his case), then this last December 9th he had surgery to close his soft cleft palate and to start separating his fingers. Both were very successful - Thank God! Jonathan will have another surgery late February or early March to do more work on his fingers. I, like you, would like to have more children but am feeling a little unlucky in this whole area. I have been to see the genetic counselors in our area (Appleton, Wisconsin) and they have told me that we also experienced a spontaneous mutation, but of course we are still concerned. I was greatly concerned by the fact that my first pregnancy ended in miscarriage and how that could possibly relate with Jonathan's Apert's Syndrome. The genetic counselor felt very strongly that there is not much chance that they were related in the least. As I am sure you know the incidence of miscarriage is high (sometimes without the woman even knowing) and especially high in first time pregnancies. When I did miscarry I believe my OB told me the incidence was about 25% of first time pregnancies. Also I want to make sure that you know that they have identified the gene abnormality and should be able to test for it-if not now in the very near future. This should allow for a good portion of your future pregnancies to have one less worry. Please keep in contact it is nice to know another person about my age with a son about my sons age. I know what you have gone through and would like to encourage you to stop feeling like this could have been your fault. There is no way, even if it was something like a slight fever or environmental exposure that you would ever be able to find it now.

Take Care and God Bless

Ann Gentz ========================================================================= Date: Mon, 6 Jan 1997 12:31:53 +0000 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Faye Meeks-Aubrey <fmeeksau@ISD.SAGINAW.K12.MI.US> Subject: Re: age MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hello Chad, Denise and Daryl

My son Roderick Meeks was born with Aperts I was 30 at the time - believe it or not thats not old. Roderick is my second child, my first was born normal no complications. During my pregancy with Roderick I had all the normal test pregancy tests - the only test that gave the doctors a little concern was that my sugar, I tested above normal but they felt it was nothing to be concerned with since I tested above normal during my first pregancy. Roderick was born 11 lb 14 oz, my first born 6 lb 4 oz.

I said the above to let you know that your concern is valid but the odd are very small and the doctors are now alerted to the smallest possibility. I had no clue and was nieve to the possibility of having a child with any kind of birth defect. I feel the birth of Roderick has changed me - I am a stronger person because of him. It is amazing what you can do and will do because of the love for your child. I was one that fainted at the sight of cuts, stitches, blood. So changing bandages was a real challenge (Roderick has had 7 surgeries on his hands and they look great and are functional with some limitation). And I feel great that I only fainted 2-3 times and not 7 times.

Keep believing in GOD because he will never give you more than you can handle. ========================================================================= Date: Mon, 6 Jan 1997 23:23:36 +0400 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Simon Gavin <simon@EMIRATES.NET.AE> Subject: Intoduction, and Thanks Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi All

At the prompting, and before the thanks to Cap't Don (God, he weilds a MEAN PC - have you seen the updated Teeter's page - AMAZING - or is that A MAZE-ing, but only to confuser (thank you, Mr "Buff" Moody, couldn't have coined it without you) illiterates like me), firstly,

A HAPPY, OPERATION SUCCESSFUL, NEW YEAR TO YOU ALL FROM DUBAI,

and secondly, an introduction, for those who don't know us (most), an apology for total sloath, for those who do (a few), and an escape route for all - press DELETE EVERYTHING ..... NOW - technical, or what ?

The family, in reverse order :

Cian, pronounced Key-an, 9 June 1996, diagnosed Apert's Syndrome, after reference by the delivering Paed to a local library, but I can see we're not alone in that !

Shauna, pronounced Sean-a, 27 Oct 1994, diagnosed apprentice teenage delinquent and master manipulator-in-waiting.

Aoife, pronounced -or maybe I'll just let you figure that one out -, future breaker of hearts, no doubt, principally her father's.

Simon, me, 10 August 19?? - should I, shouldn't I ??????? - OK, you've earned it, 58, and

Carol, 16 Sept you must be joking - suffice it to say I'm a Toy Boy- YES !!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!(1957) - ouche, she just HIT me !!

This is a quick one guys, but I really must congratulate you all. We are very isolated in terms of contact with other CF Families, and it is wonderful to see this kind of forum established. Now forgive me if I offend (those who have had previous E's can vouch for the frequency of this occurence !!) anyone- I've left my file of printed E's in the office, and I've no intention of saving and switching out to search through 3 zillion messages to find the right one, so if any of my following references are wrong, or if I get a name wrong, forgive me (translated : who cares ??).

CONGRATULATIONS - to ALL involved, but mostly TEETER (Don, the Children's Charter is still been worked on, and Teeter's contribution is most welcome - Cian is now joining in - "There are times when I am NOT going to sleep until I get a CUDDLE !!")

NUTRITION - Wonderful work, Qing - Thanks. All inter-related, but being involved with an Aperter really does open up a whole new world.

Now if I could just find that bottle of Ginsen ......

EMOTIONS - Qualified to speak from all sides in terms of age - I may be 38, but I (almost) feel like a teenager (those who sniggered, please leave the room), and sometimes the kids make me feel almost "one foot in the grave" - I believe the range of emotions we all have gone/are going through cause us to seek, as we normally would with a problem, others of a similar age, background, and experiences, to turn to. But, and you may not believe this, we knew no-one within our circle who knew what Apert's (or other CF syndromes/conditions) were! Well now, all of a sudden we are in a situation where we not only have to deal with our own feelings, but have we to develope relationships with people of different ages, from widely different locations and backgrounds, and mostly through a glorified typewriter ! From our point of view, thank God you were there, and that the natives were (more than) friendly.

However, we're relatively new to this, and while we will get there, come on 'ol timers', tell us we're not alone in the feelings we have, and that we're not the only ones who said "Why us ????"

Joana, I can emphasise - Carol had an emergency-C, and after I had made sure Carol was allright, a nurse who did'nt know took me to a room where I was confronted by Cian and a Paediatrician looking at a big book with pictures ! It took me a week to recall the scene !!

General - folks, there's lots more - FUTURE KIDS -us ?? Rosemarie & George, may it happen - we talked to a genetist in Gt Ormond St - 50:50 where one parent is Apert, there is a DNA test (as others have said), but I don't know at what stage of pregnancy; Denise - we're OLD, thinking about a 4th, if you can believe it, Carol has a not dissimilar early Gyny history, and even after Aoife and Shauna, have all the concerns you expressed - to be revisited; JOINTS; SURGERIES, Cian will start this year, DISTRACTION, etc...

but I'm rambling, and my typing is going to hell.

We may be intermittent, but we're here.

To finish, we need a "moniker", you know, like "10-4 Rubber Duck" - suggestions appreciated, but be warned, we demand a right of reply. What do you think of "the DG's (Dubai Gavins)"......

PS Aoife - prounced EE-fa - figure that one out - must be Irish.......... ========================================================================= Date: Mon, 6 Jan 1997 18:43:32 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Dawn and John Jennerjohn <DnJJenner@AOL.COM> Subject: Re: Intoduction, and Thanks

A thank-you to Simon.... just wanted to thank you for the smiles you put down in words what I've been trying to do for a while now. and you did it in such a way that gave me a few giggles, and they were much needed.

Thank-you again Dawn (mom of the Jennerjohn clan)