22 December 18 2008 at 21:09:31 GMT
| Comments: GodSpeed to All of You (&me). |
21 December 10 2008 at 04:13:49 GMT
| Comments: Hello everyone- I was on this site yrs ago but lost computer contact-I'm back and so nice to see whats new with the site! I'm doing well and my rombergs hasn't progressed in the past 10 yrs so I'm very blessed! |
20 October 13 2008 at 12:23:04 GMT
| Comments: this is the first time that i here about this sindrome,and is in my son case, he is only 15 and i feel so sad and i don't know how or what to say sometimes. i just will like to have more information to know how can i help my son not to be so depress about this |
19 September 29 2008 at 18:35:22 GMT
| Comments: My mother has had this disease all of my life, I am now 23 and further researching it; I just never thought it was as big of a deal as I am realizing. She never really talked with me about it; because I was scared to bring it up. Is it life threatening? |
18 September 27 2008 at 06:42:27 GMT
| Comments: i am also suffering from the disease, hope you could guide me and enlighten me |
17 September 08 2008 at 02:04:09 GMT
| Comments: My 5 year old daughter was just diagnosed this past December, its nice to get some information because the doctors have not been able to tell me much. |
16 August 19 2008 at 21:39:37 GMT
| Comments: I have been effected with this since the age of 5 and have felt very much alone....it's great to see this on the web |
15 July 22 2008 at 02:55:09 GMT
| Comments: I have Romberg's and have been looking into the disease for the last 12 years. I'm only 26 years old, so it's beautiful to see a whole community whose been as lost and scared as I have been. God bless. |
14 July 21 2008 at 22:57:15 GMT
| Name: |
E-mail: |
| Location: new york |
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| Comments: YOUR JOYFUL SPIRIT REMAINS STILL IN MY HEART. NINE YEARS HAS SWEPT QUICKLY BY YET THE MEMORY OF OUR DAY IN NEW YOKR CITY STILL LINGERS IN MY THOUGHTS. LOVE YOU ALWAYS TERRY!! |
13 July 11 2008 at 03:33:55 GMT
| Comments: As a young child very hard to live with. I grew older joined the Marine corps. Now I am 37 years old with three kids and a sexy wife who loves me very much. Let me know if any parent out there needs help. I believe my story might help many others!! God bless you all. |
12 June 04 2008 at 23:01:50 GMT
| Comments: keep it up best wishes for you |
11 May 30 2008 at 01:07:30 GMT
| Comments: In memory of Katie Goodspeed who passed away May 27 2008. A very specail person who suffered with this terrible disease. Rest in peace, Katie. You will be sadly missed. |
10 May 29 2008 at 20:28:27 GMT
| Comments: HEAVEN HOLDS AN ANGEL
LOVE YOU KATIE |
9 May 28 2008 at 14:42:09 GMT
| Comments: Thanks, this helps alot! |
8 May 13 2008 at 01:32:31 GMT
| Name: Greg |
E-mail: |
| Location: Idaho |
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Comments: I just wanted to get online and wish you a happy Birthday Terry. I hope that you are in a great spot and that you are keeping a place in line for me. :) How is everything treating you in heaven? I can only imagine that you are putting as big of a smile on their faces as you did on all of ours. I miss you and there is so much to talk about, but I suppose that will have to wait until you are taking me on the grand tour. :) I hope you still know how much I love you and how much your entire family and the world in general misses you....... You would have been 47, that means I am 45.. Who would have ever believed that we got this darn old.. Ha ha
Take care buddy, and since time is just a blink of an eye where you are, I will see you soon. :)
Love, Your little brother, Greg |
7 April 28 2008 at 01:49:12 GMT
| Comments: Happy Birthday in heaven Terry!
Miss you always. |
6 April 27 2008 at 19:55:40 GMT
| Comments: I was so happy to hear about this website because I have struggled with a form of Romberg's Syndrome for many years, and I am looking to learn more from others with similar experiences, and about successful ways to continue with my rehabilitatiion to improve upon the results of this syndrome. John |
5 April 18 2008 at 01:39:22 GMT
| Comments: i am researching parry rombergs and found this website i have parry rombergs in the left side of my face |
4 April 05 2008 at 11:05:00 GMT
| Comments: i check this out now |
3 March 25 2008 at 00:04:51 GMT
| Comments: Hello,
This is the first time I've visited your website and was touched by how many beautiful people I saw in your photo album!
I've suffered from Perry Rombergs Syndrome for over 20 years and have never met or spoken with anyone else who has this condition.
Thank you for the support! |
2 February 12 2008 at 02:36:08 GMT
| Comments: Marilyn, I am sorry that I haven't been in touch lately. But, my computer had crashed and so I had to get another one. I tried to send you an e-mail the other night but it wouldn't let me so I don't know what I have done to cause that. So, I am hoping that I can get mail and stuff from you all now. Sincerely, Donna |
1 January 01 2008 at 05:20:07 GMT
| Comments: Happy New Year Everyone! |
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