Sandra Horan - 12/27/00 07:58:41
My Email:sandy@bunt.com
Where are you from?: Bruchmuhlbach, Germany

Comments:
Greetings from Germany, My best friend's niece (two y/o) was recently diagnosed with SWS and we were surfing the web to learn more. I really loved your story. It was very optomistic, hopeful and inspiring. You can feel the love for your son through your words. You all are blessed to have each. I pray he continues to grow healthy and happy! Sandy

John McNally - 12/19/00 19:58:04
Where are you from?: Tucson, Ariz.

Comments:
Hi, I'm an RN who's had a little experience with kids diagnosed w/ SWS. I'm glad Jordan is doing so well. Keep the faith!

Tracie Martin - 12/14/00 03:00:32
My Email:traciemr@hotmail.com
Where are you from?: Chicago

Comments:
It is nice to hear a story of a child not so severly affected, I have a ten month old daughter with SWS who despite the partial siezures and a little trouble recovering full use of her right arm, is developing wonderfull. Feel free to e-mail me if yo like.

Jennifer Cramer - 12/08/00 20:14:43
My Email:Jennifer.Cramer@1110.army.mil
Where are you from?: Waynesboro, PA

Comments:
I wish Jordan the best of luck. My prayers go out to him and his family.

Mary - 12/05/00 21:17:36
Where are you from?: Meas, AZ

Comments:
GO Jordan.

Low Kui Lieh - 11/28/00 08:34:51
My Email:kllow@hanson.com.my
Where are you from?: Malaysia

Comments:
My son Low Jie Chong having this SWS since Jan 2000 and now he is 18 months old baby. In the past two months, it is seemed to be worst. Almost having a seizure every week. God bless you and your family

Staci Hammer - 11/16/00 13:12:06
My Email:stacilin_77@yahoo.com
Where are you from?: Washburn, WI

Comments:


girish - 11/12/00 07:43:31
My Email:ggiri
Where are you from?: uk

Comments:
very good effort.we hope and prey that everything goes well.

Amy Reilley - 11/06/00 23:08:01
My Email:delarroy@correoweb.com
Where are you from?: Peru, South America

Comments:
Thanks for sharing your family's story. I am a pediatric occupational therapist working in Peru and I have a patient with SWS and am looking for information. Also I am looking for good news to share with her mom, so thanks!

Alexandra White - 10/28/00 13:59:51
Where are you from?: Leicestershire, England

Comments:
I've read with great interest of Jordan's story. My daughter Lydia who is now five was also diagnosed with SWS at the age of two. Lydia's seizures are similar to Jordans, but are also now well controlled. She is a bright, bubbly, intelligent young girl who continues to develop well. Like you we also researched SWS and found that some of the information was very overwhelming and frightening, and at times we were worried about Lydia's future. Although it is still of concern to us, we have an excellent Consultant Paediatrician. Regards Alexandra White 28.10.00

Patricia Gillespie - 10/27/00 17:38:02
My Email:patriciagillespie@hotmail.com
Where are you from?: Sutton, west Virginia

Comments:
Hi! I just wanted to let you know that I have a miracle child also. Her name is Cecillia. She is now seven. She was diag. at birth with SW. She has had a hemispherectomy for the seizure activity. She is now GREAT. Smart as a whip. She is also the be t thing that could have happenend to me and my family. Jordan is a doll. Type me if you get this message. Patricia Gillespie sutton, WV

Deborah Salazar - 10/23/00 17:59:08
My Email:DeborahSalazar@Flextronics.com
Where are you from?: San Jose CA

Comments:


George Klassen - 10/23/00 01:40:30
My Email:vklassen@escape.ca
Where are you from?: Manitoba Canada

Comments:
We learned a week ago that our 4 month old great-granddaughter has struge_weber syndrome and are wondering what we can expect in the future. Thank you, from George Klassen

Dr M.R Shashibhushan - 10/19/00 06:57:02
My Email:drsbhushan@yahoo.com
Where are you from?: India

Comments:
I am a pediatrician.Looking for information about SWS.I am very happy to see Jordan 's story.Good luck to him Regards Dr shashibhushan

shamam - 10/18/00 18:30:35
My Email:mehran@xsinet.co.za
Where are you from?: south africa

Comments:
best of luck

Carol Hrynda - 10/18/00 00:21:06
Where are you from?: Oceanside, CA

Comments:
Jordan's is a wonderful story. Thank you for sharing. My grandaughter also has SWS yet has a positive story. Savannah is eight years old and was diagnosed with SWS at birth. Laser treatments during the first two years of her life faded her birthmark c nsiderably. She does have glaucoma but has never had a seizure and lives a happy active life. I shall think of Jordan and remember him in my prayers.

Bettina Smith - 10/16/00 18:11:40
My Email:Scharfen@flinthills.com
Where are you from?: Kansas

Comments:
Hi, I really enjoyed your webpage and story.I was looking for something related to Klippel-Trenaunay Syndrom.My daughter is 4yrs.old and was diagnosed with this syndrom at birth. Well,good luck to you and Jordan. Bettina

GLORIA - 10/12/00 09:05:27
My Email:GCCOTHRE@GRNCO.NET
Where are you from?: ARKANAS

Comments:
HI JORDAN'S PARENTS I HAVE DOWN'S SYNDROME TOO! I WOULD LIKE TO BE JORDAN'S FRIEND, HE IS A CUTE LITTLE BOY, GOD BLESS YOU! GLORIA

Jeixa Fabian - 09/26/00 20:56:11
My Email:rtj1379@aol.com
Where are you from?: Brooklyn, NY

Comments:
My Son Tyler Has Sturge Weber Syndrome and I am still taking it hard. Tyler's story is so similar to Jordan's. I Just hope and pray that they both will do very well in the future. Sincerely, Jeixa Fabian P.S. Feel free to write or email me at any time.

Mrs Shem - 09/25/00 06:37:54
My Email:reutensmas@hotmail.com
Where are you from?: Malaysia

Comments:
Hi, My husband has the Sturge-Weber syndrome. He is doing fine. I began reading on SWS eversince I met him. Anyway if you have any information on SWS, please let me know. Mrs Shem

sarah price - 09/21/00 21:37:17
My Email:gkeeler@gm.dreamcast.com
Where are you from?: england

Comments:
Your information has been very useful for me as I am currently caring for a child with Sturge Weber. Best wishes to Jordan.

sherry gill - 09/19/00 03:46:24
Where are you from?: porter,tx.

Comments:
My daughter is 34 with sws.she is like a 9 month old baby but is a joy to my heart.She was supposed to only live to 11 but boy has she fooled lots of doctors. Keep praying, GOD LISTENS.

Heidy Stephenson - 09/16/00 20:57:16
My Email:hcmshohoho@hotmail.com
Where are you from?: Nephi, Utah 84648

Comments:
Hello Jordan and family, Read your story, I am glad to here about someone else. I have a 13 year old daughter named JaNell with SWS and it is very hard at times. All we can do is our very best. Good luck to you all. My prayers are with you. Heidy & JaNell Stephenson

Heidy Stephenson - 09/16/00 20:51:36

Comments:


Kirsty - 09/15/00 17:48:15
Where are you from?: England

Comments:
I work in a school for "special" children and we have a boy with the same syndrome. It was very encouraging to read about Jordan. Best of luck for the future.

Sonia Gulley - 09/14/00 16:58:05
My Email:srg270302@webmail.dcccd.edu
Where are you from?: Dallas, Texas

Comments:
My nephew Jasper Gulley has the sturge weber syndrome and I am currently studying child development. We are doing reports and I chose to learn more about Jasper's condition and also share my research with the others in my class. Thanks for the web site. br>
Gay Thienpont - 09/13/00 03:55:48
My Email:thienpontgay@hotmail.com
Where are you from?: San Antonio, Texas

Comments:


sandra - 09/09/00 01:33:28
My Email:sejames721@netzero.net
Where are you from?: rossville,ga

Comments:


Candy Sanborn - 09/01/00 19:11:47
Where are you from?: Chandler, AZ

Comments:
Doing research. Thanks.

karen - 09/01/00 03:41:30
My Email:s3490@aol.com

Comments:
Good luck with your child. We too have a young boy - 4 1/2 with this same condition. It's an interesting journey - and one you can't predict. Our son is doing well. While we have him in therapy 5 hours a week, he's making wonderful progress. Also, you' e fortunate to be working with Dr. Maria. We met him last summer at the S-F Conference - he seems like a truly wonderful doctor - and person. Best wishes for the future!

Vana Fanning - 08/30/00 02:03:15
My Email:VANAB@webtv.net
Where are you from?: Wichita,ks

Comments:
My little girl olivia 2 now have SWS. Mom please write me sometime. Where do you live? Good luck Jordan!

s - 08/28/00 20:08:33
My URL:http://s

Comments:


Mary Sullivan - 08/27/00 21:01:42
My Email:marm50@hotmail.com
Where are you from?: Leavenworth, Kansas

Comments:
My first grandchild was born August 18 and spent her first week of life in ICU. She has a port wine stain on her forehead and very red, blotchy patterns on her skin. The CAT scan revealed a small space between the brain and the skull. I am going to vis t her for the first time over Labor day. She has had a MRI and the preliminary was good but they are saying SWS. We are all praying and I'm so hopeful...especially after reading your story and seeing your precious little guy. Thank you for thr hope. M ry Sullivan They live in V. Beach, Va.

Brett Vaisey - 08/27/00 19:13:28
My Email:vaisey@iprimus.com.au
Where are you from?: Australia

Comments:
All I have to say is don't worry about Jordan I was born with the same condition perhaps a little more severe but at age 36 I lead a normal life, sure I have the odd seizure but combined with my medication and regular scans Im just as fit and able as anyb dy else . My best wishes to you all and god bless , Brett.

Brett Vaisey - 08/27/00 19:04:05

Comments:


PENNY TALLEY - 08/23/00 17:02:03
My Email:tracer71@yahoo.com
Where are you from?: VIRGINIA

Comments:
I CAME TO THIS WEBSITE BECAUSE I WAS READING AN ARTICLE IN WOMANS DAY MAGAZINE AND THE PORT WINE STAIN CAUGHT MY EYE SO I CAME TO THE INTERNET FOR SOME ANSWERS. MY DAUGHTER HAS A HUGE PWS ON HER CHEST AND HAS HAD SOME PROBLEMS IN THE PAST AND IS DEVELOPM NTALLY DELAYED. SO I THOUGHT IT WOULD HELP. GOOD LUCK WITH JORDAN AND GOD BE WITH YOUR FAMILY

Suzanne Little - 08/22/00 19:27:28
My Email:suzanne.little@cna.com
Where are you from?: Germantown, Maryland

Comments:
I'm glad everything is going well with Jordan. My daughter is 10 mos old and has had one seizure, she is a little weak in her right hand but so far everything else is good. I'll keep praying for the best. Best wishes to you and your family.

dee shirley - 08/07/00 01:50:14
My Email:littlecamille&yahoo.com
Where are you from?: gainesville,fl

Comments:
dearest Jordan, sometimes, even the smallest and youngest among us become our teachers. the story of your struggle with your illness and your fight to get well has helped so many of us, for others who have the same illness as you, & for those among us with other struggl s both physical & emotional. you have given all of us an example of strength, & courage, & faith & you remind us to look past our struggle & keep our eyes on God who will see us through. thank you Jordan for your gift of hope. i will keep you in my praye s & trust that God will keep you well & continue to bless you & your family as you have blessed others with your story. love dee

RODNEY FABIAN - 07/25/00 19:04:30
My Email:RTJ1379@AOL.COM
Where are you from?: NEW YORK

Comments:
I thank god that i found that web page of your son. My son is diagnosed with sws on Feb 2000. He was six months when it happen, and he has been ok since,until just this month july. He had a seizure in his sleep which left his left arm temporarly paralyzed. We rushed him to the hospital to find out that he inded had a seizure ih his sleep. He was hospitalized for 4 days in those days he had 2 seizures the first 2 days lasting over 10 minutes. As of today he is fine. thye have him on tegretol and dilantin and that is holding him down.This story has really encoraged me and given me hope that things can come out well.. Thank you for sharing your experience.

RODNEY FABIAN - 07/25/00 19:04:05
My Email:krazienat@hotmail.com
Where are you from?: NEW YORK

Comments:
I thank god that i found that web page of your son. My son is diagnosed with sws on Feb 2000. He was six months when it happen, and he has been ok since,until just this month july. He had a seizure in his sleep which left his left arm temporarly paralyzed. We rushed him to the hospital to find out that he inded had a seizure ih his sleep. He was hospitalized for 4 days in those days he had 2 seizures the first 2 days lasting over 10 minutes. As of today he is fine. thye have him on tegretol and dilantin and that is holding him down.This story has really encoraged me and given me hope that things can come out well.. Thank you for sharing your experience.

Rob - 07/25/00 13:12:44
Where are you from?: Canada

Comments:
Thanks, for the hope.

Melanie - 07/24/00 23:10:04
Where are you from?: Canada

Comments:
Good luck!! And remember, the spirit is the stongest healer... we just have to learn how to use it! :) Say a HUGE hello to Jordan! He is so cute!! :o)

RITA - 07/23/00 23:38:10
My Email:CCANGADO@INTRAMED.NET.AR
Where are you from?: BS.AS. ARGENTINA

Comments:
HOLA. LES PIDO PERDON POR NO ESCRIBIR EN INGLES. ME ALEGRA QUE JORDAN ESTE BIEN. CON MI ESPOSO TENEMOS UN HERMOSO BEBE DE 9 MESES CON STURGER WEBER. CUANDO LEIA LA HISTORIA DE JORDAN RECORDABA LOS DIFICILES MOMENTOS CUANDO NACIO MARTIN. NO SABIAMOS DE QUE NOS ESTABAN HABLANDO. HISTORIAS COMO LAS DE JORDAN NOS DAN ESPERANZA Y NOS DAN OPTIMISMO. SUERTE . RITA.

- 07/23/00 22:51:53

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casey schulte - 07/21/00 01:46:10
My Email:casey_schulte
Where are you from?: collinsville, IL

Comments:
I am so glad to hear that your son is doing well. I decided to visit your web site because I am a physical therapy student and am working with a 50 year old patient with SWS and wanted to know more about the disease. I went to school for three years at t e university of florida in gainesville and am familiar with shands hospital and the excellent care they give. I will keep your son in my prayers. sincerely, Casey Schulte

Andrea Hinojos - 07/17/00 01:41:29
My Email:xxchonchis@yahoo.com
Where are you from?: Las Vegas, NV

Comments:
Thank you for puting up this site. On Wenesday, my son is going in for a CAT scan to see if he has Sturge Weber Syndrome. The doctor's had previuosly told me that the seziures would start a six months and continue for life, but Colin who is now 7 months h s yet to have one. But they want to check again to make sure. Jordan's story put's my mind a little more at ease. THANK YOU!

rachele - 07/10/00 23:09:55
Where are you from?: tulsa

Comments:


Ab van der Wagen - 07/08/00 07:13:08
My Email:wagen@introweb.nl
Where are you from?: The Netherlands

Comments:
I'm a pediatrician and read your site. It is a fantastic clear site. Greetings.

Karl Score - 07/07/00 07:04:51
My Email:scorefam@prodigy.net
Where are you from?: california

Comments:
our 4 mo. old son has sturge weber

martacarbonell - 06/20/00 19:22:55
My Email:martacarbonell@hotmail.com
Where are you from?: Miami

Comments:
Thank you for sharing your experience. I found out about 3 hours ago that my grandaughter might have this syndrome, and I want to know everything about it. Thanks again

SHELLEY WILLIAMSON - 06/14/00 17:06:41
My Email:WHITTAKERDEBBIE@HOTMAIL.COM
Where are you from?: IINDIANAPOLIS, INDIANA

Comments:
MY DAUGHTER TAYLOR WILLIAMSON IS 4 YEARS OLD HAS STURGE-WEBER AND WE BELONG TO FOUNDATION. JUST LEARNING HOW TO USE INTERNET USING FRIENDS COMPUTER AT MY WORK. TAYLOR WAS DIAGNOSED AT 11 MTHS DOING PRETTY GOOD BIRTHMARK ON HALF OF FACE SEIZURES AND GLACOMA IN LEFT EYE WE HAVE 1 YEAR OLD DAUGHTER AND 6 EAR OLD DAUGHTER ALSO, SO FAR VERY HEALTHY. YOUR SON IS SO CUTE VERY GOOD TO READ NICE STORY EVEN THOUGH HE HAS SEIZURES WE BOTH ARE LUCKY COMPAIRED TO MOST I HAVE READ ABOU HAVE A GOOD DAY AND GIVE JORDAN A HUG!! SHELLEY

SHELLEY WILLIAMSON - 06/14/00 17:06:23
My Email:WHITTAKERDEBBIE@HOTMAIL.COM
Where are you from?: IINDIANAPOLIS, INDIANA

Comments:
MY DAUGHTER TAYLOR WILLIAMSON IS 4 YEARS OLD HAS STURGE-WEBER AND WE BELONG TO FOUNDATION. JUST LEARNING HOW TO USE INTERNET USING FRIENDS COMPUTER AT MY WORK. TAYLOR WAS DIAGNOSED AT 11 MTHS DOING PRETTY GOOD BIRTHMARK ON HALF OF FACE SEIZURES AND GLACOMA IN LEFT EYE WE HAVE 1 YEAR OLD DAUGHTER AND 6 EAR OLD DAUGHTER ALSO, SO FAR VERY HEALTHY. YOUR SON IS SO CUTE VERY GOOD TO READ NICE STORY EVEN THOUGH HE HAS SEIZURES WE BOTH ARE LUCKY COMPAIRED TO MOST I HAVE READ ABOU HAVE A GOOD DAY AND GIVE JORDAN A HUG!! SHELLEY

Sandy Freeland - 06/07/00 14:58:17
My Email:sandy.freeland@USAA.com
Where are you from?: Currently Colorado Springs

Comments:
My niece in Indianapolis has a 4 year old daughter, Taylor, with Sturege Weber. Her case is more severe than Jordan's, but she is doing quite well and is a darling, bright girl. Trying to locate the Sturge Weber Foundation web site. Do you know how to ind it? Not in Yahoo. Great story and surely will give some parents encouragement and hope. Sincerely, Sandy Freeland

- 06/06/00 22:29:05

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Kim I. - 06/06/00 17:48:53
My Email:Kim_Ingram@yahoo.com
Where are you from?: Alabama

Comments:
Jordan is a very special little boy.

pam - 06/06/00 14:48:19
Where are you from?: missouri

Comments:
i came to your web site because my niece has sturge webber syndrome and i wanted to learn a little about it.

salisha - 05/31/00 18:07:40
My Email:alisc@sbu.uk
Where are you from?: trinidad

Comments:
it has made me realize how fortunate i am and my percieved problems are not really as major as i make them out to be.it made me realise how selfish i am.thanks alot.love and best wishes come your way jordan.love

- 05/31/00 18:03:47

Comments:


Kathy Cropper Solis - 05/26/00 16:46:01
My Email:coachkathy@yahoo.com
Where are you from?: Harlingen, Texas 78551

Comments:
Hello and thank you for having this site. We have a new baby in our family who was recently diagnosed with this syndrome and I am attempting to learn more about it. The baby will be seeing a specialist on Wednesday, May 31. The baby lives in Kentucky an will be seen in Lovisville, Ky. Thank you Jordan, for your site. You are a cutie.

Donna - 05/18/00 19:17:56
My Email:donna@calcuttafuller.com
Where are you from?: Charlotte, NC

Comments:
I just happened onto your website looking for info on Tegritol. Your son is beautiful! To God be the glory for your wonderful story!

julia Gomez - 05/08/00 18:26:00
My Email:juliagomez.hotmail.com
Where are you from?: Spanish

Comments:


leigh starkey - 05/08/00 00:52:24
Where are you from?: burwood/sydney

Comments:
Your letter was very informative.A friend of mines son is taking tegretol now for 2 years just checking references. Take care of your selves leigh

Josh Honda - 05/03/00 19:00:35
My Email:yoshiro.honda@eu.sony.com
Where are you from?: Belgium

Comments:
Dear Kathy, I am a Japanese living in Brussels, Belgium. Our friend family daughter 6 months old was diagnosed last night as SWS, and the only thing I could do was taking care of the elder sister of them and find information in the web. I found some medical related ites in Japan, US, UK, but nothing lifting as yours. Since I have a son also suffering from a very rare disease, and living in a French speaking culture, I knew information is the only hope we as non-medics can ask for. Thank you very much for your effo t to start your HP, I am sure my friends will read it over and over again in order to keep their faith.

tch in tempe,az. - 04/18/00 00:37:52
My Email:katzelhymer@webtv.net

Comments:
I am very interested in your story to allow a better freedom of thought to one of my people whom I have found to be a precious adult with this problem.

ashley mullins - 04/16/00 13:45:54
My Email:ash_matt13@gurlmail
Where are you from?: west virginia

Comments:


GGHEE - 04/12/00 22:12:29
My Email:MAHO6ANY@HOTMAIL.COM
Where are you from?: ROCKVILLE, MARYLAND

Comments:
i am doing a report on diseses in my anatomy class at Wheaton High School, and i was looking for diseses that no one is really familiar with or no nothing about. I happened to stumble across your son's page and here I am in a local college writing you about how I happened to be here. I wish you and yor son (plus your whole family) the greatest of love and i hope everything works out the best for you. God Bless!

mary tunnell - 04/12/00 21:37:22
My Email:tunnell@mt-vernon.com
Where are you from?: mt.vernon, texas

Comments:
hi Jordan, I'm 14yrs. old and I was born with port wine stains on one side of my face. years ago, they were just starting laser treatments and my parents insurance company would not pay for treatment. my parents saved money for my first treatment when I was four. y mom fought & fought until she finally worn them down. i know what it feels like to have the treatments and I hate going. they've removed alost all the stains by my eyes. i only have an occassional tremor, but never any seizures. i wanted to let you know that my parents taught me right from the start that you are who you want to be. i decided to be happy and outgoing and not to let rude comments get me down. once people got pass the first glance at my face they got to know me. i was lucky because i had a family that loved me. and i guess you are pretty lucky because you have a family that loves you enough to start this web site. i found this websit because we were told at school to do a report on a disease,disorder or syndrome. i decided to share my story and how you can face something like this and look back and be thankful for being me! best to you and thanks for sharing your story. mary

Denise - 04/12/00 01:58:39
Where are you from?: Australia

Comments:
God bless Jordan and his family.

Maria Ortega - 04/01/00 06:14:00
My Email:Chayito3@juno,com
Where are you from?: Houston, Texas

Comments:
We are the parents of a 13 yrs. old twin boy who was born with port wine nivus stain, and the pediatrician gave us the wrong diagnostic, he said it was SWS. We took'em to the best specialist doctor's in Houston and everything was negative. We love so much our son too, he's so special and very inteligent, and thank you very much for share your beautiful story of love and dedication to your son. God Bless you all!

Tammy Gordon - 03/30/00 06:58:50
My Email:tammyg@sterkinekor.com
Where are you from?: Johannesburg, South Africa

Comments:
Hi Jordan, Your story is inspirational and I'm sure it will let those parents who have just discovered that their little treasures have been diagnosed with SWS, feel more at ease about it! All the best - keep strong. Tammy

ivan - 03/29/00 17:24:06

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lynnae - 03/28/00 20:09:07
My Email:naes2luvsic4u@yahoo.com
Where are you from?: seattle

Comments:
I hope and pray for you. When you have the love and strenth from your family you can make it through any thing BIGGEST WISHES kids at tyee high school

Debbie Walker - 03/27/00 19:26:06
My Email:djwalker@tcaxp1.tricounty.tec.sc.us
Where are you from?: Townville, SC

Comments:
Hi, My name is Debbie Walker. My best friend whose name is Katie Webb has a 16 year old son named Brandon who has the same disease that Jordan has, and his is worse. He is retarded because his brains were so mangled up when he was born, but he has come a lo g way since he was diagnosed with the disease from birth. I am glad to hear that Jordan doesn't have the disease as bad as Brandon has it. I will pray for Jordan as I have been praying for Brandon. I hope he continue to do well as he grows to become an adult. May God Bless you! If you want to give my friend Katie some support, her email address is KatieW@Clemson.edu God Bless! Debbie Walker

Kathy Spinks - 03/24/00 14:46:44
Where are you from?: Port Huron, MI

Comments:
I'm glad to hear Jordan is doing well. My cousins baby has been diagnosed with SWS, possibly glouwcoma. Everyone has been prayer for her and her family.

Janelle Willoughby - 03/16/00 05:06:36
My Email:c0003346@musgrave.cqu.edu.au
Where are you from?: Bundaberg, Queensland, Australia

Comments:
Hi! I have a son Joshua, who will turn 4 in May with sws. Diagnosed a 8 days old, and our seizures count in the hundreds (I think).

Rubina Dang - 03/16/00 02:29:37
My Email:rdang1@yahoo.com
Where are you from?: chicago

Comments:
Hi, I am a dentist in chicago, and the other day I was treating a patient with SW Syndrom. Although his condition was pretty severe, I was touched by his courage and constant kind smiles. I was doing research on SWS on the internet and I came across Jor an's Page. Jordan is a lucky little boy who has parents that are so understanding and loving. Good luck to you Jordan. You are going to be just fine.

Kiersten Kurzanski - 03/16/00 02:05:55
My Email:kurzansk@juno.com
Where are you from?: Buffalo, Ny

Comments:
I am physical therapist that works in a school setting. I treat a little girl with sws and was looking for more information. I will definitely share your page with my co-workers.

PAT MOLLOY - 03/14/00 12:14:44
Where are you from?: ENGLAND

Comments:


WS Baard - 03/10/00 05:48:52
My Email:Willersb@dex.co.za
Where are you from?: South Africa

Comments:
We have a daughter Liezl with SWS. We can associate with your dramas and optimism. She is now 22 years old and the light of our lives.

Edie Caito - 03/09/00 13:15:59
My URL:http://www.independencepark.homestead.com/IndependenceParkHome.html
My Email:CaitoEdie@msn.com
Where are you from?: Indiana

Comments:
What an adorable site! I wish you all the blessings in the world! I have a 13 year old son with SWS (he is one of those cases you read about that scared you! LOL) But he is 4 years seizure free now due to a left functional hemispherectomy in 1995. We have been through it all and know the paramedics and EMT's on a first name basis! But any family dealing with SWS has a rough road to travel...and I wish yours the best!

- 03/06/00 19:42:35

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Debbie - 03/03/00 16:28:41
My Email:honeybear@qconline.com
Where are you from?: Iowa

Comments:
I ahve a cousin who has sws and is going to be 40 yrs old this April. When he was diagonosed there was not things available then as there is today. Unfortunately, Dan has not lived the life that sws kids are allowed to live today. My aunt and uncle wer told he wouldnt live to be 3 yrs old, boy did he fool them!!! He is now not able to live at home anymore due to illness to my aunt but he has adjusted very well in his new home and is very content there. I think its great to hear all the success storie of kids and would love to be kept updated on your story.

Carrie Ray - 02/28/00 15:45:12
My Email:Momof2m@aol.com
Where are you from?: Decatur Illinois

Comments:
Hello, I was just checking back I hadnt look at Jordans page in a long time. I cant belive how big Jordan has gotten he is so cute .. Hugs and Kisses Carrie

sally aigner - 02/23/00 09:14:01

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Christy Faerber - 02/18/00 03:39:29
My Email:cfaerber@umich.edu
Where are you from?: Chicago

Comments:
I wish Jordan all the best and God Bless

Shellie C.Ogden - 02/13/00 21:14:07
Where are you from?: Odum, GA.

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I am a preschool intervention teacher. I am going to have a little girl with SWS. I just wanted to find out all I could about SWS. You have a precious little boy. Good luck and may God be with you always.

sara tinant - 02/11/00 21:34:10
Where are you from?: lakeview, s.d.

Comments:
interesting

barbara Croy - 02/09/00 02:04:59
My Email:dacroy@tir.com
Where are you from?: michigan

Comments:
Our daughter has sws and is 15years old. She has seizures, and a learning disability. She also has glaucoma in the eye that was aafected by the birth mark. She is handling this disability pretty well. Thanks for your web page.

Ellen - 02/08/00 04:02:07
My URL:http://www.bigfoot.com/~chunkymonkey
My Email:chunkymonkey@bigfoot.com
Where are you from?: Ocala, FL

Comments:
Hi Jordan Ray... I hope your website is coming through better on your computer! We love you!

-Ellen (Ed, Baby Jane, and Eddie-roo)

Maria Ramos - 02/05/00 23:00:41
My Email:ray_lex@yahoo.com
Where are you from?: Miami, Fl

Comments:
Keep praying all the time and you will see the result. Your little boy will be soon like any other and the spot on his brain will be away forever. God bless you. Maria

Randy Crosby - 02/03/00 18:43:19
Where are you from?: G.R., MI

Comments:
Thanks for sharing. Your case is mild compared to that of my son and even his could be much worse than it is.

Renee Warburton - 01/29/00 07:45:44
My Email:thewarbs@tpg.com.au
Where are you from?: Canberra, Australia

Comments:
Hello Jordan!!! What a beautiful and very loved little fella you are! I have two wonderful children - Benjamin (3, SWS) and Madeleine (1)... with a third due in July... All the best to you honey. Renee

hanneke bos - 01/21/00 18:12:19
My Email:h_bos@chello.nl
Where are you from?: dronten netherlands

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Hanneke heeft ook sturge weber. Ze had zware aanvallen. In november 1999 is ze geopereerd,een hemisferectomie. Op dit moment gaat heel goed.

Krista Rietberg - 01/20/00 15:12:44
My Email:rietberk@state.mi.us
Where are you from?: Lansing MI

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Laurie Tener - 01/20/00 00:28:56
My Email:cattener@juno.com
Where are you from?: Albion, Indiana

Comments:
I have a 12 year old daughter with SWS. She was diagnosed at birth. She had her first seizure at 19 months old. She had a few seizures in the following years. She is now taking Depakote Sprinkle. She also has hypo-thyroidism. She is now doing fine an has been seizure free for over 3 years! My daughter has some learning problems in Math. She has a mild case of Sturge-Weber also. Thank you for sharing your story.

Timothy Didier - 01/16/00 02:14:16
My Email:didier.family2@gte.net
Where are you from?: Ft. Wayne,IN.

Comments:
I'm glad to see your son is doing so well! He's beautiful! I'm 34 years old, with a pws on the right side of my face.I had a seizure for the first time a few days ago while suffering with a mild case of the stomach flu.The seizure was mild but it shook me up, I've never been sick a day in my life (well, hardly); to make a long story short, I'm going in for a bunch of tests next week. I didn't even know this disease existed, I just thought I had a big birthmark! These web sites are fantastic, but I'm findin out that a great deal of them are about babies and small children and it's breaking my heart. I've been blessed for 34 years without a single symptom, I was never teased as a child, and I have a huge family for support and love. Thank you for putting thi sight together, I will say a prayer for Jordan and for you! I have to get back to my 2 year old before she pulls me out of this chair! Sincerely, Timothy Didier

Courtney Chapron - 01/12/00 18:45:01
My Email:crchap@yahoo.com
Where are you from?: Simi Valley, CA

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My Nephew has SWS and is doing remarkably well! He has to go through so many doctor appointments(neurologists, laser surgeons, opthomologists etc) that I sometimes wonder how he keeps the bright smile on his face!! Good luck to Jordon and God bless!

Jordan - 01/09/00 16:04:50
My Email:Jordie_16@hotmail.com
Where are you from?: Australia - Adelaide

Comments:
Hey little Jordan have a happy and save life! I hope everything goes well for u and ur family! Stay save cool and happy from Jordan

margot millar - 01/06/00 04:19:51
My Email:cmillar@bulkley.net
Where are you from?: smithers,b.c. canada

Comments:
a truly,inspiring, full of love story which brought tears of happiness and joy. many thanks.may God bless you all. love, Margot

Ruth Robert - 01/05/00 14:00:12
My Email:rrobert@aol.com
Where are you from?: Jersey

Comments:
I am glad things workout for Jordan....Good Luck!

julie vine - 01/04/00 22:26:52
My Email:njmcv.vino@cwcom.net
Where are you from?: england

Comments:
Our son Matthew is the same as Jordan he is now 8years old and he continues to do wonderfully well. He is no longer on any medication and has been fit free for 5 years. Matthew has no visual mark on his face. We send our best wishes and hope that Jordan c ntinues to do as well as he is.

Jessica - 01/04/00 04:24:52
My Email:jesse_d38@hotmail.com
Where are you from?: Edmonton Alberta

Comments:
Thanks for the story. A friend of mine had a baby eight days ago and she was diagnosed with SWS. Your story helped. I'll be praying for you!!

Rita de Cassia Ferreira - 01/02/00 20:32:09
My Email:ritacmf@sti.com.br
Where are you from?: São Paulo - Brazil

Comments:
Hi! I have a cousin who has SWS. Her name is Renata and she has 3 years old. Write me, if you have any comment. Than you! And GOD bless you!