12/24/01 19:00:43 GMT
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Merry Christmas to all of you. God Bless you in the new year. I hope you all know that my thoughts and prayers are with each and every one of you..... MERRY CHRISTMAS!!!!!!!!!!!!!!!!!
12/12/01 18:30:52 GMT
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Dear Terry, I can not believe how bad this still
hurts. I still wait for the pain of your death to pass and let me smile
about all the things that we shared. Today, I told the News Director here
that a good story would be on orphan diseases. I explained about how many
people are affected by these and how alone they feel. I said that they
should know that there are places to go to find others that they can share
things with. She said it was a good idea. She wanted me to gather info
and websites. Naturally I had to include Rombergs connection. While I was
doing the research I had to sit and read the new pages. I also sat and
read yours. I still can't look at any of it without sobbing uncontrollably.
The tribute page hurts a lot. It feels good to know you were so loved,
but at the same time it reminds me of the major loss. In time it will be
a place to reflect and recall what a wonderful human being, Brother and
friend that you were. Right now it's just painful. Now a fast not to Steve
and Theresa. Email me sometime if you guys would ever like to talk. I would
love to hear you on the phone and to talk a little. You guys were so close
to Terry and I always appreciated that. Through some of the hardest years
of his life you werew what he leaned on for strength. All of you in the
Rombergs connection were exactly what he needed. Thank you all so very
much. The years keep ticking by Terry. It's been almost 2 years since you
passed away. I imagine at this rate it won't seem like very long until
I see you again. But I sure miss you. All my love, Your little brother
Greg
12/06/01 03:27:28 GMT
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12/01/01 22:54:35 GMT
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wow,i just found this web-site and it is amazing
to know that im not the only one out there with this disease....thank you
sooooo much
11/22/01 05:02:13 GMT
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I have parry romberg syndrome
11/12/01 22:37:27 GMT
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Just a huge thanks for all the support this connection
has given to our family this past year. You have helped us through the
darkest days. Kelley is 10 and has learned that there is a lot of compassion
in this world. What a wonderful thing to learn at such a young age. She
is learning to live with Rombergs, as we all are. Many good things have
come out of this experience. Again, thanks and God Bless! Let's keep supporting
each other! Love, Donna
11/12/01 13:57:14 GMT
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To Greg and the 'Rombergs Family'.. I never met
Terry....but I know how much his brother Greg loved and adored him. He
was everything Greg wanted to be. I think Greg was worried Terry got all
the attention when they went out singing...:) Two beautiful men who loved
each other dearly. Lisa Adelaide Australia
11/04/01 06:51:23 GMT
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10/31/01 20:00:41 GMT
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You know what? I am so sick and tired of hearing about people picking on someone because of this disorder. My Brother had it and he went through hell because of it. He had to struggle with self doubt his entire life. He let it get to him until he became a shut in. Then he finally said " NO MORE ". He let people say what they wanted to say and carried on with life. I was never that polite. If I ever heard anyone say anything to him that was rude, they had to repeat it from the seat of their pants, because I would not stand there and listen to it.
You people have so much to give in life. You should be so proud of who you are. Terry, in my opinion, was still a very handsome man. He had a heart of gold. I can live forever and I will never meet another him....People should treasure you for who you are.. It's the most important thing about you... God bless... P.S... I miss you Terry, I hope you are keeping my seat warm in Heaven......
10/19/01 14:09:45 GMT
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Wow, this is difficult... Im 35, and I was diagnosed with Perry Rombergs in 1997 although I have had it since I was 9/10. My brothers always picked on me about my "crooked chin". It wasnt until 1997 that I wanted to do something about it. So I went to a maxifacail surgeon and have had two reconstructive surgeries since. I dont feel as though the turnned out as well as the could have and am considering a thrid surgery. Up until yesterday, I thought I was alone in all of this, I didnt realize that there were others out there going through the "same" thing.
09/21/01 22:01:09 GMT
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I have just learned I have Rombergs, I'm tring really hard to deal with this,I got it from a Bad car accent. so i would like to know more about whats happing to me..
09/01/01 19:53:31 GMT
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I have Romberg's and have had surgery. Please contact me if you would like to meet me. I live in Hacienda Heights, CA and I have had surgery.
08/27/01 13:16:19 GMT
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remember Isaiah, I thought I would say hi. things are in God's hands. I hope everyone is well.
08/16/01 16:15:11 GMT
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I also have Rombergs and am 58 years old. I read an article in the local newspaper and was very surprised and curious about the connection.
08/15/01 22:47:01 GMT
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Good site.
08/13/01 15:45:57 GMT
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Just wanted to make sure that everyone had the link to Kelley's story: http://denver.rockymountainnews.com/kelley/
Good job sweetie! Theresa
08/12/01 18:12:51 GMT
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Hi, I became interested in Rombergs (and first heard about it) after reading a newspaper article about it. I study how cells live and die on a molecular level and how this impacts on health. I also am a strong supporter of medical marijuana. The recent scientific literature shows that our bodies produce marijuana-like compounds that control most of our basic body functions including pain and the immune system. Having spoken with many people suffering from numerous diseases, marijuana has miraculous effects for many of them. Relavent to Romberg, marijuana controls epileptic seizures, multiple sclerosis pain, wasting syndrome,and migraines. Most doctors are not familiar with the modern literature. Does anyone have knowledge of its effects on Romberg?
08/11/01 16:49:17 GMT
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I just read the wonderful story in the DenverPost/Rocky Mt. News Saturday edition about one of the children affected by Romberg's. I wish to send them my love and prayers and to let them know that not all people think that they are so different from the rest of the world. We all have troubles, although some seem trivial compared to what the Sperry family are going through. My heart goes out to Kelley, her mother, father and both brothers. I can not imagine what heartache it must be to have such a thing happen to your family. I hope that someday, soon, they can find peace with what has been dealt to them and that they love Kelley unconditionally, she is a beautiful girl...maybe not in her mirror but in her heart...Kelley girl this is for you...let your inner beauty shine and those around you will love you for who you are not what you look like! Again my prayers are with this incredible family, God Bless everyone!
08/02/01 18:13:39 GMT
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My sister suffers from this. She is 23 years old and her entire life has been shattered by the complex she carries as a result of her deformities. Although others tell her than the dents in her face and the deteriorating tissue is hardly noticible, she has had severe psycological consequences. She does not date, has never had a boyfriend, rarely visits malls or goes out of the house. It seems that the only times she goes in public are to doctor visits. It's heart breaking to know that someones life is a daily nightmare. Although she has been taking Paxil for depression (and it has helped a bit) she is still searching for a doctor or a new break through that will give her hope. If anyone can offer advice or support to her e- mail me and let me know. Thank you and thank you for this wonderful web site.
07/21/01 03:27:59 GMT
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thank you so much for being here, ifeel so much better now knowing more about rombergs and i feel that i know all of the persons from the personal stories.
06/09/01 23:59:43 GMT
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Hi i'm heidi I was diagonosed when i was 13 years old but it progressing between the ages of 4 and 5 years old. I was woundering if there was anyone else out there my age that has parry romberg's syndrome. I am 18 years old and just wondering!!! thanks heidi
06/09/01
17:22:57 GMT
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Hi Jurdy, Please write us again at this address (rombergs@hotmail.com). There seems to be a problem with your e-mail address and I can't get back to you. Marilyn
05/15/01 15:49:53 GMT
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Dear Terry, It was one year ago that you left this world. I was thinking this morning, with you living in Regina last year, Even if I knew you would die that night I could not have left home in time to say good bye. I know it's a weird thought, but it's one that I had. In about 9 hours, last year on this date you would pass away. After a day of riding bikes and swimming with Laurissa. At almost this exact time you called me last year on the 15th. I was busy and said I would call
you back. I tried all day and never got ahold of you. The last thing we said was we loved eachother. Then life went on. The next day I was getting ready to go fishing when the phone rang. Somehow I knew it was horrible news. I remember looking at the phone and feeling odd. Then Laurissa told me that you had a heart attack and you died. I felt my life spin out of control and away from me at that moment. Everyone keeps telling me that the pain will fade away. I just don't know how it ever will. Most people have a support network, they have a lot of people that they know and love. I had you. Most people had a secure home life that they grew up in, one house, one neighborhood, one set of school freinds. I had you. There is no one to share old memories with, the memories were just yours and mine, now they are just mine. I was thinking the other day about that time we had to live in a garage. We were young and dumb and both of us quit our jobs and that's where we ended up. I was 15 and you were 17. It was in Minnesota,do you remember? God, how hard was that? It was miserable. But somehow I look back and it wasn't miserable at all. It was just life. Life led us so many places and put us through so much. I want you to know though. I would not trade one of the great times or one of the hard times for any other memories in the world. It gave me a chance to know you better than anyone. That was a gift to me from God...... Mom, Brian, Dad, Barb and Jim all say Hi.. We all love and miss you. I miss you so bad that I don't know how to handle life sometimes. But I am trying...:) I love you and miss you forever, Your Little brother, Greg
05/15/01 02:20:40 GMT
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Dear friends I'm writing this letter just to share my feelings regarding a special moment. It's going to be one year since our dearest Terry Bureau passed away. Exactly one year ago he physically left this world; but I am glad to see that he is still among us, dwelling in our hearts. Of course, there are endless things I'd have loved to ask him and share with him; I regret not having talked about them with him. Humans for some reason, always take the loving ones for granted... I never thought death could be so tragic, so ultimately strict, so cold. For that very reason, I love you all. I remember that day as if it were yesterday. That morning I checked my e-mail after a few days of not haveing spare time to do it, and I got that terrible piece of news. I felt very sad for some time, but after a while,Terry seemed somehow to "stick" to me in a different way; a more intimate way, a spiritual connection, something I was able to feel (and still am). Let the might of compassion arise to bring up welfare to us. To the memory of a good man, all efforts are to his tribute.
Your friend Manu ps: Terry I love you. :O)
05/14/01 18:42:43 GMT
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Dearest Terry, May the Lord love you in the comfort of his hands on this day. Miss you-----adele 5-15-01
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