Welcome to my nifty Dreambook, a free guestbook service from New Dream Network and the DreamHost!If you have a minute, please add your entry to those below by signing my Dreambook!
| Name: | Stands To Speak Like The Storm Approaching |
| E-mail address: | msindianhorses@aol.com |
| Homepage URL: | http://msindianhorses.com/_wsn/page4.html |
| Comments: | Only very "small spirits" consider "height" significant.
Check out my site about the "little giants" that made America great. And they are still out there - standing "taller" every day, with America's rediscovery of their gigantic spirits. |
| Name: | Marlize Chantel Olivier |
| E-mail address: | ojo@absamail.co.za |
| Comments: | Hi there; I am a 17 year old girl who have on a previous accation send a mail, this was back in 2004.
Anybody like to chat send me a mail. Regards Marlize |
| Name: | Angela |
| E-mail address: | angie_the_angel71@msn.com |
| Comments: | Hi There Everyone, I am a mother to a 15 year old daughter Alana who has kniest, we live in Scotland & attended the 1st ever KSG conference back in 1998! ( Thanks To Cory & Julia!!!) where we met 15 others with the same condition. We have never met anyone closer to home with Kniest, Hopefully this year going to London & get to meet Emma & Archie!! We had Amy from USA staying with us while she was touring UK, also Kniest, She is a wonderful person & is a Great role model to any fellow kniestian! So If anyone would like to get in touch, feel free to do so.....
Angie (mum) Alana (Kniest) |
| Name: | Joyce |
| E-mail address: | zonnetje_pruts_11@hotmail.com |
| Comments: | hello I'm Joyce the daughter from Erna:-) I have SED.
I'm 11( almost 12) years old.... and if I'm a little bit down(because of my illness) then i say to my self: always look on de bride side of life:-)...... but I have to go...... Many Greeetzzzzzzzzz And Kissis Joyce |
| Name: | Erna |
| E-mail address: | erna1969@zeelandnet.nl |
| Comments: | Hello there!!!
My daughter Joyce has SED; she is 11 years old. Doctors suggsested an operation of her neck. Is there somebody who can tell me some experience with this operation. We live in the Netherlands and there are about 6 peoples with SED. Someone told me about this site and the things I already read are very familiar. I will response to some comments in a little while. It's important to help eachother with things/illnesses that so special. Many greetzzzzz |
| Name: | marguerite |
| E-mail address: | margueriteu@hotmail.com |
| Comments: | hello i have a 12 year old son with kniest and has we live in england i have not met anyone else with this syndome would really like to contact someone in the same situation or if anyone has any advice
thanks |
| Name: | bobbi flores |
| E-mail address: | VICKYHAGEL@HOTMAIL.COM |
| Comments: | HI MY NAME IS BOBBI I HAVE A LITTLE GRANDDAUGHTER HER NAME IS JAYLA 9 MONTHS OLD WITH KNIEST.I KNOW OF NO IN DENVER THAT HAS THIS TYPE OF DISPLASA.SHE IS VERY TINY.ABOUT THE SIZE OFA NEW BORN.IT IS NOT CLEAR HOW SHE GOT THIS.CAN ANYONE EXPLAIN IT TO ME.CAN IT JUST HAPPEN OR DO ONE OF THE THE PARENTS CARRIE THE GENE.I WOULD LIKE TO SEE PICTURES OF SOMEONE OLDER WITH THIS TYPE.IF IM BEING RUDE PLEASE FORGIVE ME.I ONLY KNOW WHAT IS ON THE INTERNET.IF ANYONE HAS MORE INFO PLEASE SEND IT TO ME.21,NORTH,5TH,AVE,BRIGHTON,COLORADO,80601, THANK YOU.720-275-2188 |
| Name: | Marijke Kumbruck |
| E-mail address: | marijke.kumbruck@advalvas.be |
| Comments: | Great website!! I am the mother of a 11-year old boy with Spondylometaphyseal dysplasia (SMD). It seems much more rare than SED. I'm still looking for people with SMD in Belgium or Europe. My son had a bilateral osteotomy and then Ilizarov frames to try to correct his legs and hips. Any one familiar with this?? The result was not as we expected.
Kind regards from Belgium. Marijke. |
| Name: | Lauren |
| E-mail address: | sflanigan@sbcglobal.net |
| Comments: | Hi! this site is very informative.. My son is 2years old with SED/Kniest also with medical complications, looking for someone out there who is going through the same or close to it. Doctors do not have a long term prognosis. Hate living life on egg shells.
Lauren F. |
| Name: | karl jefferies |
| E-mail address: | hammondstg@aol.com |
| Comments: | its my wife and i first child and he has been diagnosed wit kniest if there is any one that may be able to help us with special support groups please reply to message. |
| Name: | Donna Hammock |
| E-mail address: | joendonna@ccrtc.com |
| Comments: | Great site...Im a 57 year old women with sed. I have two boys both born adverage. One is 6 foot tall the other 5'11'' tall. My first boy has two children and they are fine. My second son has a three year old with Down Syndrome. I have quite the story to tell. We live in Indiana. We're originally from California
Sincerely, Donna |
| Name: | ROSALINDA |
| E-mail address: | SANCHEZGAR@AOL.COM |
| Comments: | HI, IM ROSA (24yr.)ITS MY 1ST TIME GOING THIS FAR TRYING TO FIND INFO. ON SED. I THOUGHT I KNEW QUITE A FEW, BUT NOW I KNOW ALOT MORE, FOR EXAM: I DIDNT KNOW ANYTHING ABOUT KNIEST UNTIL NOW,& ALOT OF THE SYMPTOMS ON THIS PAGE MY DAUGHTER SABRINA (AGE4yr.)& MY SON JONATHAN (AGE1yr.)EITHER HAVE OR HAD! BOTH W/ SED!! VERY INFORMATIVE,I BEEN DEALING W/ MY DAUGHTERS SED SINCE 2000, BUT I STILL HAVENT FOUND THE IDEAL PEDIATRICIAN IN MY AREA(DALLAS,TEXAS)FOR HER! MY SON HAS A GREAT ONE BUT THEY ONLY SPEACIALIZE UNDER 3yr. IF THERE IS A FAMILY OUT THERE OR ANYONE READING THIS AND NEED TO LEARN HOW TO DEAL W/ THIS CONDITION LET ME KNOW! IT'S A PIECE OF CAKE! TAKE CARE!!!! |
| Name: | Torill |
| E-mail address: | torill@online.no |
| Comments: | Hello
I am a 40 year's old woman. I have SED,and see forward to have contact whith sombody else,we have two cildren.Ouer son has also SED.I am 94cm.Please right me? I am from Norway. It's a wonderfull site. Thank you. |
| Name: | Michael |
| Homepage URL: | http://www.gayalcoholics.com/aa-meetings.html |
| Comments: | Thanks for a great site full of useful information! |
| Name: | Marlize Chantel Olivier |
| E-mail address: | ojo@absamail.co.za |
| Comments: | I am a 15year old girl living in South Africa. I was born with SED and am about 1m 10cm tall. I would like to study to be a Biologist or work with animals. Finding clothes is a major hassle!
Anyone that would like to chat please your details. |
| Name: | suzanne |
| E-mail address: | bmclark6@yahoo.com |
| Comments: | My name is suzanne Clark,
My beautiful 4 month old baby Breanna was diagnosed w/ SED. It would be nice to speak to others w/ this disorder or other parents with children w/ SED. I know it is going to be a long road ahead of us, since Breanna has a lot of medical issues. It would be nice to chat with someone. It is very hard when not many doctors are familiar with this disorder. |
| Name: | Tondalaya Durst |
| E-mail address: | leeya313@yahoo.com |
| Homepage URL: | http://hometown.aol.com/dtondalayalow/myhomepage/index.html |
| Comments: | Hello, I am a 29 yr. old female, I come from a family of 10 and I happen to be the only short statue one in my family. After my second son Luke whom I passed the short gene to, I began reseaching for the best doctors for him when I came across LPA web site. Unfortuntaly my son passed away. So I continue to search for myself. I have never encountered another short statured person until this past year, I meet Annie From Akron. Wow 29 yrs without never meeting another short person. I am well on my way of finding the right kind of help. The Dr.s have diagnosed me with Leptodactylyic (SED). I don't know what it entitles but I'm going to find out as much as I can. I thank God that I came across LPA website. And I thank LPA for the wonderful information they provide. Tondalaya |
| Name: | stephanie Rhodes |
| E-mail address: | srx@qad.com |
| Comments: | at long last i realise i'm not the only mother feeling the way i do, my daugfhter Elle 5 months has been diagnosed
sedc and our doctors know so little about this condition they have never dealt with before. can some one please give me some information so i know what to expect for my daughters future. |
| Name: | stephanie Rhodes |
| E-mail address: | srx@qad.com |
| Comments: | at long last i realise i'm not the only mother feeling the way i do, my daugfhter Elle 5 months has been diagnosed
sedc and our doctors know so little about this condition they have never dealt with before. can some one please give me some information so i know what to expect for my daughters future. |
| Name: | Ed Madara |
| E-mail address: | ed@selfhelpgroups.org |
| Homepage URL: | http://www.selfhelpgroups.org |
| Comments: | Good web page. Is there a primary parent coordinator responsible for the good works here? When I clicked on "Contact Us", no e-mail address came up. Perhaps it's just my computer.
Ed Madara NJ & American Self-Help Group Clearinghouses www.selfhelpgroups.org Our American Self-Help Group Clearinghouse website provides a free keyword-searchable database of over 1,100 member-run national, international, online, and model "self-help" support groups for any specific illness, disability, addiction, bereavement situation, parenting, caregiver concern, abuse, or other stressful life situation; a listing of local non-profit self-help group clearinghouses worldwide; suggestions for starting both community and online groups, summaries of research studies; and a registry for those Americans trying to start new nationals or internationals that don't yet exist in the world. Our NJ Self-Help Group Clearinghouse helps people to find & form mutual help groups. From anywhere within NJ phone 1-800-367-6274, or 1-800-FOR-M.A.S.H. (Mutual Aid Self-Help) to obtain information on any of over 4,500 local NJ support groups, and over 1,100 national and online self-helps groups for most any illness, disability, addiction, bereavement situation, parenting problem, caregiver concern, abuse, victim, or other stressful life situation. Free help to those persons interested in starting a new self-help group in their community is provided, e.g., in small part by networking them with subsequent callers from that same area who seek that type of group. Since its start in 1980, our Clearinghouse has helped over a thousand individuals to start their own NJ support groups - turning a significant number of those seeking help into care providers themselves. |
| Name: | April |
| Comments: | What a great resource for parents! People of short stature with all different kinds of dwarfism will benefit from this page.
April |
| Name: | ann |
| E-mail address: | ann@netexpress.com.au |
| Comments: | hello to all Iam a mother with a daughter that has spondylo metaphyseal dysplasia she is 18 years old we live in Australia we know through the doctors here that she is the only person that has this disability she has dwarfism added with it and other medical problems and we were just checking your sight hope you all well and highspiroted like my daughter. thank you ann. |
| Name: | Nancy |
| E-mail address: | nancyauestad@start.no |
| Comments: | Hello. I have never heard about other people with SED. I'm 36 years, and have a 6 year old son. We have SED. Never heard about SED. in Norway. If you want to write to my, then do so. Nancy. |
| Name: | Marj. Murray |
| E-mail address: | marjiemurray@hotmail.com |
| Comments: |
What a great site. It is so nice to have all this valuable information at hand. My 11 year old son has undiagnosed SED. We have learned so much from this site. |
| Name: | Jon Morato |
| E-mail address: | jon@jonmorato.com |
| Homepage URL: | http://www.jonmorato.com |
| Comments: | Terrific site! It's like a one stop web site for everything I want to know about Kniest. Pretty cool site. You guys did a wonderful job. |
| Name: | Max Webster |
| Comments: | This is such a fabulous site! I wish it had been around 25 years ago when Katie was born. Congrats on having all this information in one site. |