Doris O. Hestnar - 10/02/00 19:07:09
My Email:[email protected]
Name of your Williams syndrome child: Theodore Andrew
Age of your Williams syndrome child: 28

Comments:
I am so grateful to discover this site. Thank you so much for providing such valuable information. My son Teddy was diagnoised in 1975 as having Idiopathic Hypercalcemia, Elfin Facies, pulmonary stenosis and mental retardation.Having recently purchased a computer,I was seeking some medical information under the above mentioned diagnoses and was directed to this site. Parents whose children have been diagnosed with Williams syndrone are very fortunate indeed to have this site available to them. Many many thanks for all your work. Sincerely, Doris Hestnar

LINDA - 09/18/00 22:04:32
My Email:[email protected]
Name of your Williams syndrome child: TERRY..GRANDSON
Age of your Williams syndrome child: 20 months old

Comments:
TERRY IS THE SWEETEST LITTLE GUY,HE HAS THE BRIGHTEST SMILE THAT LIGHTS UP THE WHOLE ROOM. HE'S OUR LITTLE BUDDY,OUR LIFE WAS BLESSED WHEN HE CAME IN IT.

barb - 09/04/00 01:22:55
My Email:[email protected]
Name of your Williams syndrome child: girl
Age of your Williams syndrome child: 5 years

Comments:
I am the K teacher of a sweet little gal and interested in learning more about the syndrome. This is the first article I've read and want to equip myself to do the best with my student to meet her where she is and take her as far as she's ready for this y ar.

J. Krider - 08/25/00 23:31:58
My Email:[email protected]
Name of your Williams syndrome child: Sidney

Comments:
My daughter has just been diagnosed with WS. It was a total shock to my husband and I. I had never heard of this and I am now trying to find out as much info. as possible. I would like for other parents to e-mail me with comments and just for support. This is all new to me, and I am struggling! Sidney just turned two in July. She is such a ray of "Sunshine". Thanks for this excellent site.

Chantal MacIntyre - 08/12/00 00:04:18
My Email:[email protected]
Name of your Williams syndrome child: Tyler
Age of your Williams syndrome child: 11

Comments:
Very informative. Thanks so much for taking the time to provide this invaluable information.

Sondra Looney - 08/06/00 01:55:05
My Email:[email protected]
Name of your Williams syndrome child: Codie Looney
Age of your Williams syndrome child: 9years

Comments:
My daughter, Codie, has WS. She is a special miracle to me and her 7year old brother. We are wanting to meet or talk with others with WS children or have WS themselves. I am new to the internet so I am having to learn fast so please forgive any errors I make. She deserves the most this world has to offer and it is my job to make sure that everything is offered to her. She is having questions now that I need help in answering. Any new information or information on the emotions and fears of growing up wi h WS would be very much appreciated. Sincerely Sondra and Codie Looney

Sonya Pulman - 07/24/00 06:36:16
My Email:[email protected]
Name of your Williams syndrome child: Jade Hebden
Age of your Williams syndrome child: 18 months

Comments:
Jade is my niece. It's great to find all this information.

Peggy Kocher - 06/08/00 19:58:07
My Email:[email protected]
Name of your Williams syndrome child: Gary
Age of your Williams syndrome child: 13

Comments:
Gary is one of the kindest young men I have every met. There is one issue I am having a hard time finding info on. He has been showing signs of early puberty and obsessive complulsive behaavior. Have any other parents experienced this and could they help Would greatly appreciate any thoughts on this subject. Garys Pedatrition suggested looking into all avenues including drugh theropies. Gary seems to know the difference between right and wrong, but is choosing the wrong. I am not sure why and I need he p. Thank You Peggy

christy - 05/27/00 00:47:43
My Email:[email protected]
Name of your Williams syndrome child: brandt
Age of your Williams syndrome child: 5 months

Comments:
my family has gone thru alot with my nephew. he has already been thru one major heart surgery, just a couple of months ago. we recently found out that he may have WS. if anyone has any info on WS that may help me and my family to better understand plea e e-mail us. we are a close family and try to help each other out in times of need. thank you everyone who is out there. c/o christy-e-mail: [email protected]

Teresa Beasley - 05/24/00 02:16:57
My Email:[email protected]
Name of your Williams syndrome child: jerry

Comments:
on my previous entry i failed to enter my complete email address: [email protected]

Teresa Beasley - 05/24/00 02:14:44
My Email:tspricesb
Name of your Williams syndrome child: Jerry
Age of your Williams syndrome child: 2 yrs 11 months

Comments:
Jerry is our little angel and has been doing really well but he is still only 19 pounds and refuses to eat anything with texture. He is currently in PT and OT. His calcium levels have just come back at 17.4 so we are looking for immediate ways to bring hi calcium levels down. he is currently drinking three cans of pediasure a day and we need an alternative nutrition source. any suggestions would be greatly appreciated.

Alicia - 04/05/00 13:19:04
My Email:[email protected]
Name of your Williams syndrome child: Mar�a Guadalupe
Age of your Williams syndrome child: 19 a�os

Comments:
We lived in Argentina. (Sorry for my English). My daugher is lovely like all WS. I want to tell, for this persons who speaks Spanish, that they can contact the aAsW (Asociaci�n Argentina de S�ndrome de Williams) [email protected]. You can see Mar�a Guadalu e in www.welcome.to/aasw .

Damyel Walker - 04/04/00 02:52:28
My Email:[email protected]

Comments:
my 9 year old cousin has this disease and i have thanked god every day of my life for bringing this special boy in my life. I truly believe that it takes talented patient people to raise special people that is why god has chossen all of you!! I am also r searching WS for my final project for my senior report for a human anatomy class any information that anyone would like to send would be GREATLY appriciated!! god bless!!

Nancy Ray - 03/30/00 21:06:12
My Email:[email protected]

Comments:
I work as an enhanced assistant ,one on one, with a child with Autism. I am a going to start a new position working with a student with Williams Syndrome. I found this site to be a wealth of information. Thanks- great job!!

Caroline Hodson - 03/28/00 19:46:29
My Email:[email protected]
Name of your Williams syndrome child: Holly
Age of your Williams syndrome child: 12

Comments:
Holly is lovely, she is very able, brilliant at spelling, reading, riding her bike, swimming and normal 12 year old stuff. Has many friends enjoys going to cinema with friends and shopping in town. Already mails people and would like some other WS chums to mail to.

Barbara Nomellini - 03/03/00 15:08:17
My Email:[email protected]
Name of your Williams syndrome child: Jill
Age of your Williams syndrome child: 22 yrs.

Comments:
I think my daughter has this, I'm going to have her tested.

Melissa Moser - 03/02/00 23:39:57
My Email:[email protected]
Name of your Williams syndrome child: Ashley Jo Moser

Comments:
PERFECTION... WE HAD ASKED THAT YOU BE HEALTHY, WELL WE CAN'T HAVE EVERTHING, ALL THAT WE CAN DO, IS TAKE IN THE JOY YOU BRING. HE MADE YOU FOR US AS HE SAW FIT, HE WANTED YOU THIS WAY. WHY HE DID IT, THE REASON HE HAD, WE REALLY CANNOT SAY. WE CAN ASK FOR NOTHING MO E THAN YOU, JUST AS YOU ARE, TO US OUR LITTLE BALL OF PERFECTION, OUR BRIGHT AND SHINING STAR. WRITTEN FOR ASHLEY MOSER 3/11/93 FROM MOM

Angela Whitson - 02/21/00 14:55:02
My Email:[email protected]
Name of your Williams syndrome child: Amanda Whitson
Age of your Williams syndrome child: 10

Comments:
My dauter Amanda was recently diagnosed with WS. At an early age we could tell that something was not quite right. The only thing the doctors could ever tell us was that she was a little slow. She has always been in special resource classes at school. She was given a series of tests at school and their results showed that she was mildly retarded. In my heart I knew that was not to be the case. Thanks to a neighbor that has a child with ADD, which she also has, I found out about Dr. Morin of Kingsport, TN. e took one look at Amanda and could tell she had WS. I often think that if we had known about WS when she was younger we could have been educated about it sooner. She is very special and very loved by everyone she comes in to contact with because of her o tgoing and loving personality. She has never met a stranger. You have my email address and I would love to know everything about WS and especially older children as well as adults with WS. Thank you Amandas mom Angela Whitson, Johnson City, TN.

- 02/21/00 14:53:50

Comments:
My dauter Amanda was recently diagnosed with WS. At an early age we could tell that something was not quite right. The only thing the doctors could ever tell us was that she was a little slow. She has always been in special resource classes at school. She was given a series of tests at school and their results showed that she was mildly retarded. In my heart I knew that was not to be the case. Thanks to a neighbor that has a child with ADD, which she also has, I found out about Dr. Morin of Kingsport, TN. e took one look at Amanda and could tell she had WS. I often think that if we had known about WS when she was younger we could have been educated about it sooner. She is very special and very loved by everyone she comes in to contact with because of her o tgoing and loving personality. She has never met a stranger. You have my email address and I would love to know everything about WS and especially older children as well as adults with WS. Thank you Amandas mom Angela Whitson, Johnson City, TN.

celine kirts - 02/19/00 18:38:20
My Email:[email protected]

Comments:
I am a speech therapist who works in an approved private school. Two of my students have the WS diagnosis and coincidentally, they both also have poor impulse control in regards to lying, stealing and swearing. I am trying ti find out about the incidenc of these behaviors in the WS population, and info &/or suggestions on how to reduce these anti-social behaviors, in order to share this with my coworkers who are also involved in the educational and residential support of these students. The girl is 16, and the boy is 18 (he is a residential student).

celine kirts - 02/19/00 18:37:13
My Email:celinekirts.cs.com

Comments:
I am a speech therapist who works in an approved private school. Two of my students have the WS diagnosis and coincidentally, they both also have poor impulse control in regards to lying, stealing and swearing. I am trying ti find out about the incidenc of these behaviors in the WS population, and info &/or suggestions on how to reduce these anti-social behaviors, in order to share this with my coworkers who are also involved in the educational and residential support of these students. The girl is 16, and the boy is 18 (he is a residential student).

Rhonda Morel - 02/17/00 23:21:20
My Email:[email protected]
Name of your Williams syndrome child: Jake Everett
Age of your Williams syndrome child: 4 1/2

Comments:
My son is the happiest little guy in the world! He was diagnosed at 27 months....after noticing late development (crawling, walking, talking, severe colic as infant, poor eating habits, heart murmur, etc). I switched doctors and got a diagnosis by Dr. Ken Jones in San Diego immediately. Jake has been i the special day program (with OT,ST) at the pubic schools since the age of 3. His accomplishments are astounding! He loves everyone, and speaks very clearly. His vocabulary is strong, and he has a slight heart murmur with no other medical problems. To those of you new to WS: the best advice for the doctor's involved...keep them informed! Switch doctors if they are doubtful. Push the school districts to support reverse mainstreaming with WS kids. I feel blessed knowing that my son is special, and hop everyone will share information so we can learn all that is available to us.

Sandra A - 02/13/00 13:38:53
My Email:[email protected]

Comments:
I have to write an scription about the WB-syndrome. I'm looking for any kind of information. Every-body who has something, I can maybe use, please e-mail me!!! Thank you, Sandra from Holland.

Samantha Webb - 02/09/00 15:59:47
Name of your Williams syndrome child: Randy Scott Soell
Age of your Williams syndrome child: 7 years old

Comments:
I was just browsing through the information and decided that I wanted to share. My son was diagnosed at eight months old and and we have been having fun ever since. He is such a pleasure in my life. It is the greatest thing I have ever experienced to h ve a child with Williams Syndrome. He is so loving and the funniest person I have ever met. I just wanted to pass that on. I will become more involved now that I know that you guys are out here.

Cathryn Mindel - 01/16/00 15:35:08
My URL:http://personal.lig.bellsouth.net/lig/g/c/gcmindel/gcmindel/WS.htm
My Email:[email protected]
Name of your Williams syndrome child: Eric
Age of your Williams syndrome child: 18 months

Comments:
We are so grateful to have this little boy in our life.He has taught us so much in his short life ,and there is much to learn.

Ronald Cottrell - 01/03/00 05:43:40
My Email:[email protected]
Name of your Williams syndrome child: Teri Lynn Cottrell
Age of your Williams syndrome child: 16

Comments:


Chas.& Di McFarland - 12/11/99 04:15:56
My Email:[email protected]
Name of your Williams syndrome child: Chad
Age of your Williams syndrome child: 24.....12-11-75

Comments:
Our son is 24 today. Chad was diagnoised at an early age.And although the educational process wasn't always a joy to deal with, in the end the system always seemed to see things my way. I learned early on that it was my responsibility to see that Chad got what he needed when he needed it, (and if that meant standing on top of the school district superintendants desk, well, so be it)that included shopping for a peds dr who wasn't necessarily the most learned about ws but truly cared about my child and was w lling to learn, searching for alternitive educational materials, but most importantly knowing our rights thru it all.We graduated high school in 1995. He has held the same job at a local mill since his jr yr in HS. Chad is a productive and contributing me ber of our community. He is a person who had to wade the all the stuff to get where he is today, but aren't we all?

Joan Kimmel - 12/10/99 00:37:28
My Email:[email protected]
Name of your Williams syndrome child: Amy Kenny
Age of your Williams syndrome child: 14 years

Comments:


Elizabeth Steen - 11/03/99 14:56:34
My Email:[email protected]
Name of your Williams syndrome child: Kiersten Marie
Age of your Williams syndrome child: 19 months

Comments:
I was just visiting the site once again, and I reread my original entry. I just wanted to post a note so everyone would be able to know of Kiersten's progress. She had eye surgery in March; after this surgery, she took off like a rocket! Before the sur ery, she really couldn't do anything on her own - two weeks after the surgery she sat up on her own and began to try to crawl! Paul and I were ecstatic!! Now, after receiving PT, OT, and Speech from our local CDC for children with special needs, Kierste is taking her first steps and will soon be walking. She is also showing a strong affinity to certain types of music - Mozart, Rachmaninoff, and Chopin seem to be her favorite classicals, while she also likes big band music (especially the Brian Setzer O chestra CD! She loves to swing!), and any Barney song, of course. We are so proud of her accomplishments, and we could not be more pleased with her loving, friendly personality. Everyone comments on what a ham she is! And her big sister, Bronte, who i now 2 1/2, loves the fact that Sissy can play with her now. We are still working on trying to regulate her blood pressure (her G-button fell out and we couldn't get it back in. Now she takes all her medicine orally and she DOES NOT appreciate that). W hope to resolve that soon with a bypass for her left renal artery. But she has now gained weight - her legs even jiggle!! I just want to give encouragement to all the parents of WS children who will visit this site - Jesus privileges a few people with is special kids, and sometimes even though they may not be with us for a long time, each one is a blessing - a EXTAORDINARY soul that He entrusted to our care for just a while here on earth. I know that may sound a bit trite, but it is so true. We are s blessed by our daughter, Kiersten, and all that SHE has already taught US about how important all the little things in life are. My prayers are with you all, and I wish you all the joy Kiersten has already brought to Paul, myself, and our family.

Charlene Ratcliffe - 09/16/99 05:07:54
My Email:[email protected]
Name of your Williams syndrome child: Debbie
Age of your Williams syndrome child: 33

Comments:
Debbie is my older sister. I have read a great deal of information pertaining to this syndrome and have studied her past. Because Debbie is older than I am I have not been faced with many of the personal issues that accompanies WS. To state that I am h ving a difficult time dealing with the realities of Debbie would be a mild statement. I see the great qualities that many of you have stated about MS individuals and I recognize many of them in her. However, she posesses several qualities that have brou ht me and my family to tears, heart ache, and near insanity. I love my sister very much but I need help. If there is anyone who has an older WS individual close to them in their lives I would love to hear from you.

annette blair - 09/12/99 07:22:35
My Email:[email protected]
Name of your Williams syndrome child: tilar blair

Comments:


michele russick - 09/07/99 01:41:53
My Email:[email protected]
Name of your Williams syndrome child: joseph russick
Age of your Williams syndrome child: 13

Comments:
thanks for all the information, anything that we could learn to help joseph is greatly appreciated.

ROBIN WISMER - 08/08/99 18:35:31
My Email:robin [email protected]
Name of your Williams syndrome child: AMBER WISMER
Age of your Williams syndrome child: 9 years old

Comments:
Amber is 9 years old. She will be 10 in March. She is a very loving and caring child. She loves music and dancing. Amber has 3 older brothers. She will be in the 4th grade in September. She is in a Learning Support Class. She is doing very well in school however math is not her favorite subject. She loves to read books. Amber has been a true blessing to our family.

Virginia Calvo - 07/26/99 14:11:35
My Email:PALMA 750 @ AOL.com
Name of your Williams syndrome child: Dean Dillworth
Age of your Williams syndrome child: 15 mos.

Comments:
This is my grandchild and I am interested to know all I can to support my granddaughter. Normally do not like to interfer but she is ssometimes reluctent to persue avenues and I believe all the support she can get will help her understand more.

Merlyn Ashby - 06/30/99 06:07:25
My Email:[email protected]
Name of your Williams syndrome child: Amy Baldwin
Age of your Williams syndrome child: 4 years old

Comments:
At this stage, Amy doesn't seem to have any cardiac involvement. How do you watch for hypercalcemia and is there anything you can do to prevent it?

Ann Donnery - 06/28/99 15:46:36
My Email:[email protected]
Name of your Williams syndrome child: Sam Donnery
Age of your Williams syndrome child: 12

Comments:
My son Sam is going through early puberty and has begun to show signs of obsessive compulsive behaviors as well as increased anxiety's. I am wondering if any other parents have experienced this and if they have found any helpful drug therapy. Any thought or advice would be most appreciated.

Barbara L. Stokes - 06/28/99 03:57:17
My Email:[email protected]

Comments:
My child has an inverted 7th chromosome (and so do I). My daughter, now 6, is starting to experience some type of heart problems. I have heard about Williams and decided to do some research on my own. It will be another month before she can be seen by a pediatric cardiologist. Waiting will drive you crazy.

Lynda Magill - 06/14/99 12:25:04
My Email:[email protected]
Name of your Williams syndrome child: Zebulan Wade Magill
Age of your Williams syndrome child: 21

Comments:
Hallo, My son is an adult with williams syndrome He was diagnose when he was 2 years old everything I have read and went thru are true. The proplem I am having are his eating habits he does not want to we have always forced him to eat, I am wondering if it is anorexia does anyone else have this proplem. Thank you Lynda Magill

Doroyhy montgomery - 06/13/99 19:52:21
My Email:[email protected]
Name of your Williams syndrome child: Brandon
Age of your Williams syndrome child: 8yrs.old

Comments:
Brandon is my grandchild has had open heart at the age of 6 to open constricted aorta.Had surgery on both ankles at one year.We live in a very small town and would like any information on education. Brandon has been in special ed since he was 3.He is now years old and in a inclusion class and teachers have a hard time understanding his syndrom.My daughter would like any info that anyone has.

Diana - 06/09/99 21:44:11
My Email:[email protected]

Comments:
Hi - I'vejust discovered this website. I am a Human Communcation student and am currentlr researching Williams Syndrome for a project I'm working on. I have been blessed with a healthy son (18months) but I feel it necessary to be aware of potential syndromes and problems. I pray for you all and hope you iifnd the strength to support your children ! Diana

Angel - 05/08/99 02:28:05
My Email:[email protected]
Name of your Williams syndrome child: Natalie
Age of your Williams syndrome child: 2and a half

Comments:
We just found out last week our special girl has ws.She has no apparent medical problems.She is developmently delayed in alot of areas.I would love to hear any information anyone has.What should i exspect for health. If your ws is like my girl ,i love the . She is so full of personality.God BLESS all of you.

DAN AND GINA CATRON - 05/06/99 03:06:00
My Email:[email protected]
Name of your Williams syndrome child: ASHLEE
Age of your Williams syndrome child: 3YRS

Comments:
ASHLEE IS OUR DAUGHTER SHE WAS DIAGNOSED WITH WS AT THE AGE OF 1 1/2. HER CARDIOLIGIST NOTICED HER FACIAL FEATURES ALONG WITH A HEART MURMUR AND SOME OTHER CHARACTERISTICS.SHE RECENTLY HAD A HEART CHECK UP AND IS DOING GREAT. THE DOCTOR DOESN'T WANT TO S E HER FOR TWO YEARS. WE ARE VERY BLESSED. THANKS FOR A PLACE TO LEARN ABOUT OTHER WS KIDS.

Margaret - 04/18/99 23:35:19
My Email:[email protected]
Name of your Williams syndrome child: Jacob
Age of your Williams syndrome child: 3 1/2

Comments:
Jacob is 3 1/2 years old. He was born 3 weeks early and weighed 5lbs 11/2oz. He was born with 3 VSD's and 1 ASD. He was followed by a cardiologist who found he had SVAS and pulmonary branch stenosis. He suspected WS so referred us to a genetic specialist. Jacob was diagnosed with WS at 7 weeks of age by using the FISH test. He was labeled "failure to thrive". He was very colicky and was not tolerating any of his formulas. He was hospitalized for dehydration. At that time we tried Nutramigen for a 2nd time which he could now tolerate. He was very sick during his infancy and definately not a good sleeper. He began early intervention at the age of 3 months. This included OT and PT. He also saw a feeding nurse which I don't think really helped. At the age of 3years Jacob started a 3-4 year old program through the public schools which has been really great for him. He receives OT,PT and speech therapy. He has been sick over the past month with stomach problems and has not wanted to eat much. His blood tests reveal that his protein and calcium level are low. He has lost 2 lbs in 1 month bringing him down to 26 lbs. He is going for a ultrasound and upper GI next week. I would appreciate any response or feedback. Has anyone else gone through this type of thing. All in all Jacob is a very happy little boy. He is the greatest joy to us all and the love of my life. I would welcome any responses. Thank you.

Lyn van Lidth de Juede - 04/09/99 20:35:46
My Email:[email protected]
Name of your Williams syndrome child: tyler
Age of your Williams syndrome child: 3yrs

Comments:
I am a consultant with the British Columbia Infant Development Society. One of the children on my caseload has William's Syndrome. I am grateful for a place that I can go for information to share with other professionals and with the family. I am also a usic therapist. I have found the comments about the musicality of people with William's syndrome to be very interesting, but not unique to this syndrome. I look forward to reading more on this web sight in the future.

Tod and Jill Cagan - 04/08/99 00:49:40
My Email:[email protected]
Name of your Williams syndrome child: Jordan
Age of your Williams syndrome child: 4 months

Comments:
We're not sure if Jordan has WS yet. He had a FISH test today (4/8/99) so we won't know for another 2-3 weeks. Jordan was diagnosed with severe pulmonary branch stenosis. His cardiologist suggested he may have WS. Since yesterday, we have learned alot about this condition. Jordan has blue eyes with a star pattern surrounding the pupil.

Wendy Cykana - 04/06/99 21:33:18
My Email:[email protected]
Name of your Williams syndrome child: Kaitlin
Age of your Williams syndrome child: D.O.B. 6/6/89

Comments:


Anne + Tony Carvalho - 03/15/99 16:54:35
My Email:[email protected]
Name of your Williams syndrome child: Hannah Nicole
Age of your Williams syndrome child: 17 months

Comments:
Hannah was diagnosed when she was 1 year old. She is a very happy child and enjoys her older brother and sister. She is currently in physical therapy and will soon begin occupational therapy. We would love to hear from other families who have been blessed with a wonderful child such as ours.

Michael Miller - 03/13/99 19:11:40
My Email:[email protected]

Comments:
Hi, I'm a senior attending Lake Superior State University and am working on a paper about this condition. It has to focus on the treatment and their aptitude for music. Any information is deeply appreciated. Thank you and God bless.

Barbara Douglas - 03/13/99 00:07:03
My Email:[email protected]
Name of your Williams syndrome child: Kate McFarlin
Age of your Williams syndrome child: 10

Comments:
Kate is my grandaughter. We delight in all the joy she brings into our lives, her sense of humor,

cindy alia - 03/11/99 00:39:04
My Email:[email protected]
Name of your Williams syndrome child: Gino
Age of your Williams syndrome child: 10years

Comments:
Thanks, Karen, I just found this site. I mappreciate your work! Cindy

bridget - 03/05/99 20:04:36
My Email:[email protected]
Name of your Williams syndrome child: Laken

Comments:
I just realized that I had forgot to leave my e-mail address on the last one so here it is.

Bridget - 03/05/99 19:08:24
My Email:bridjet2000
Name of your Williams syndrome child: Laken

Comments:
Laken is my neice. When our family first found out that she had Williams we weren't sure how to react. We had never heard of this before. Of course we were all scared and didn't know what to do, but we have learned how to handle our special child. She is wonderful and has been such a blessing to our family. I don't know what I'd do without her. She is always there to make you smile with her great and caring personality. I didn't realize that there was this much information on Williams on the computer I'm so glad I found this sight. Thatnks. If you would like to e-mail me you are welcome to at anytime.

Karla - 03/04/99 17:46:49
My Email:[email protected]
Name of your Williams syndrome child: Dalton
Age of your Williams syndrome child: 111/2 months

Comments:
Dalton is my nephew that I watch and help my brother and his wife cope with everyday situations. I want to just thank you for the web site and my God richly bless you.

Christine - 03/03/99 05:37:48
My Email:[email protected]
Name of your Williams syndrome child: David
Age of your Williams syndrome child: 10 y/o

Comments:
David was diagnosed when he was 3 y/o. He has been diagnosed with a mild heart murmur, but no other major medical problems. Please keep us in your prayers as I will do with you all.

Jane Atuk - 02/24/99 07:05:23
My Email:[email protected]
Name of your Williams syndrome child: Marian
Age of your Williams syndrome child: 49

Comments:
Marian is my sister. She was diagnosed with Williams Syndrome only 3 years ago. My mother knew from the time she was born that "something was not right". Marian struggled through regular classes in school until fourth grade when she was placed more app opriately in special education. She has never married and lived at home with our parents until a few years ago. Now she is in a beautiful "Community Integrated Living" residence with three other women close to her age and ability levels. She goes to "w rk" every day in a community resource center, where she does activities called "prevoc". She has had numerous medical problems during her life and as an adult has been on several medications to control her blood pressure, anxiety and paranoia. Marian has always had a remarkable smile, beautiful blue eyes and a friendly personality. She is a very loving sister and aunt to my children. All the members of our family have learned alot from her and we love her very much. I would be happy to chat with other family members of adults who experience WS.

- 02/21/99 07:46:31

Comments:


Elizabeth Steen - 02/20/99 13:14:02
My Email:[email protected]
Name of your Williams syndrome child: Kiersten Marie
Age of your Williams syndrome child: 11 months

Comments:
I have just read through the guest book, and I am delighted to see other people with children like mine. We just returned from a three week visit to the hospital, where Kiersten was first admitted because her calcium level was 19 (almost twice the normal level). She had every test imaginable run on her; the endicrinologist had narrowed the diagnosis down to WS and cancer. I thought I would die. But then we found out it was WS, and I got down on my knees and praised Jesus that she just had a syndrome - e weren't going to lose our little girl! Now that here calcium level is down, and we're on the formula for WS babies, Kiersten is a completely different baby - she's so sweet I could eat her whole! I just want to give encouragement to all the parents ou there like Paul and myself who have just received the news - we're just thrilled that she's going to be okay - more than okay - we plan to start both her and her 2 year old sister in piano at age 5; with Kiersten's likelyhood for musical ability, mabe sh 'll be a concert pianist and we'll retire early from her success!!!! I would love to talk with anyone who would like to share about their special child!

R. Blaisdell - 02/19/99 01:45:14
My Email:[email protected]
Name of your Williams syndrome child: Brandon Michael
Age of your Williams syndrome child: 31/2

Comments:
Brandon is an absolute delight. He loves adults! He is friendly and so very socialble. He has a talent for recognizing every type of truck made! He is small, has a feeding tube, had a terrible time with ear infections and ear surgery, dosen't like loud noises, had kidney problems, heart murmur and occational irregular heart beat, late at every thing (walking, teeth erruption, hair), loves to dance to music, makes odd monkey sounds, has ADHD and microcyphaley. He is our joy and our only son. I am so glad to have found this guest book.

Paul Steen - 02/16/99 04:42:47
My Email:[email protected]
Name of your Williams syndrome child: Kiersten
Age of your Williams syndrome child: 11 months

Comments:
My wife and I just found out our daughter has Williams. In fact she is still in the hospital while the doctors decide on treatment for her blood pressure. Interested in talking to and possibly meeting other parents of Williams kids.

Holly Shields - 02/10/99 15:55:00
My Email:[email protected]
Name of your Williams syndrome child: Matthew
Age of your Williams syndrome child: 9 y o

Comments:
I just wanted to let you know that you are doing a great job with this web site. It is very informative. I particularly like the summary of medical research. Your time and effort is appreciated by me! Have a good day. Holly

Claire H - 01/29/99 07:01:16
My Email:[email protected]
Name of your Williams syndrome child: Jake
Age of your Williams syndrome child: 15

Comments:
Although Jake is fifteen and has had a great deal of medical intervention for prematurity, hydrocephalus, hernias, endocrinologic checks for small stature we are just now awaiting genetic testing for WS. What are the most reliable tests? What is this FISH test? Jake is a very pleasant young man who has been included in our neighbohood schools for the last 9 years (after four years of speech and language classes for slow language development) He will be graduating with his class in June! Where are your high school aged kids in school? Where is the expertise on WS? Medical and educational? Thanks for any responses.

Jean Wissick - 01/25/99 04:57:16
My Email:[email protected]
Name of your Williams syndrome child: Kathleen
Age of your Williams syndrome child: 29 yrs.

Comments:
We just signed onto the internet and I can't believe all the information I'm getting. I have never been so informed. It's wonderful to hear other people recognizing the same things we have known for ourselves but have a hard time explaining to other fami y members.

Mike & Kathy Davis - 01/24/99 02:44:56
My Email:[email protected]
Name of your Williams syndrome child: Kaitlin

Comments:
Kaitlin is currently in special education classes. She has few medical issues at this time. Our main concern is her lack of playmates. She has trouble making and keeping friends.

Kathy Davis - 01/24/99 02:39:37
My Email:[email protected]
Name of your Williams syndrome child: Kaitlin

Comments:
Just checked out your site - very nice.

Karen Causey - 01/18/99 03:12:27
My Email:jckc@mindspring
Name of your Williams syndrome child: Jessica
Age of your Williams syndrome child: 14

Comments:
My daughter is nonverble. She is sever mentally haddicapied. I know their are a lot of WS kids that are in the same range. The association just is not including them in their newsletters. I hope more parents. will get active with the association. I know we are very busy. I have four children. I feel it is time to get more involved. I would love to here from anyone who needs help or can give help.

Kathy Zaumeyer - 01/13/99 00:27:57
My Email:[email protected]
Name of your Williams syndrome child: David
Age of your Williams syndrome child: 20

Comments:
My son David has a lot of problems. He is nonverbal (apraxia), but uses a communication book with 12 pages and about 800+ picture communication symbols. He also displays a lot of autistic-like characteristics, and has a severe anxiety disorder. Seems t have a lot more problems than other kids we've met. Would love to communicate with someone with a similar child.

coralie dorsam - 01/01/99 04:17:37
My Email:[email protected]
Name of your Williams syndrome child: donna laurine snell
Age of your Williams syndrome child: 19

Comments:


Dietre Warren - 12/30/98 00:36:51
My URL:http ://.com
My Email:[email protected]
Name of your Williams syndrome child: Justin Warren

Comments:
I am just searching for more information about this disease. It seems I learn something new everyday. My son Justin was dignoised about two years ago . The doctors seem to think that he has a mild case, although they seem to be very unsure because no one n our area seems to know alot about this disease or even ever heard of it. I had never heard of this until my son was dignised with it. He goes to a private school even there they seem to have problems with him,because no one has ever worked with a child f his nature. Justin had an evaluation about two months ago they say hei a a cognative level of a three year old. At times I believe they sell him short. He is very loving and he asks alot of questions. Would you happen to know of any support group in or rround the North Carolina area that we may be able to attend to better understand this disease, also would you know where I COULD GET MORE INFORMATION ABOUT WILLIAMS SYNDROME

Brenda Gillette - 12/18/98 03:59:33
My Email:[email protected]
Name of your Williams syndrome child: Tracy Porter
Age of your Williams syndrome child: 31

Comments:
A recent tentative diagnosis for the above-named individual for whom I act as an advocate/support. SShe recently underwent some exploratory/diagnostic surgery for other issues but the Williams is of interest both to other staff and to her family.

Jennifer Eagan - 12/09/98 18:06:34
My URL:http://home.talkcity.com/MinivanAve/jenagan
My Email:[email protected]
Name of your Williams syndrome child: Hannah Elisabeth
Age of your Williams syndrome child: 4 months

Comments:
When Hannah was born, she was very small, prenatally she had been labeled with "intrauterine growth retardation". At 1 1/2 months she was called "failure to thrive", and the doctor practically accused me of not feeding her. At her 2 month checkup, the nur e weighed her and when the doc came in he said that since she was now 8 1/2 pounds she must be finally growing and that we could go home. After not feeling good about the treatment he was giving my daughter, we switched doctors. I took her for a 3 month c eckup, though normally they only have 2 and 4 month checkups. Within 5 minutes, the doctor found "quite a heart murmur". He referred us to a pediatric cardiologist, who found severe aortic and pulmonary stenosis. They sent us to Washington DC for the FISH test (we were currently living in Iceland, my husband is in the Navy). 2 days after we got to DC, Hannah had a massive heart attack! She was on life support for quite some time, but has since recovered and has had one surgery and is awaiting another, next one open heart to repair the stenosis', that one will be coming up just after the new year. When we called Hannah's first doctor to tell him what we found out, he said that Hannah couldn't possibly have Williams Syndrome, because that's "just too rare!" T ough we just 2 weeks ago got the test results back, we weren't upset about the fact that she has WS. We were just glad she was still alive. If we had waited for a 4 month checkup like most parents do, Hannah wouldn't be with us still. I have two messages. One is to parents who suspect something is wrong with your child but the doctor cant find anything: Don't take his word. Find another doctor. If I had listened to my doctor, my daughter would be dead today. The second message is to other parents who have just found out their child has WS: This is not the end of the world. Be grateful for the blessing you have been given. I pray that none of these other children I have read about in this guestbook are as sick as my little girl. Nobody should have to suffer in such a way. Feel free to check out Hannah's website, or email me if anyone would like to chat with another new WS m m!

lana hayes - 12/02/98 19:49:07
My Email:[email protected]
Name of your Williams syndrome child: matthew
Age of your Williams syndrome child: 12

Comments:
thanks so much for the info provided, will visit again!

carol schrader - 12/02/98 19:11:46
My Email:[email protected]

Comments:
My children are in theit 40s. I belong to the Elyria Musical Arts Society and at our lsast gathering we were privileged to have two young people who have WS. I must say I have never heard of this malady.These young people have great musical talent. The 7 yr old girl plays the piano and sings and the young man plays classical. What wounderful ability God has given them. my heart and my prayers go out to you parents and may the Lord give you strength to cope.

Elizabeth Clingersmith - 11/27/98 19:18:11
My URL:http://expage.com/page/projectdrw
My Email:[email protected]
Name of your Williams syndrome child: n/a
Age of your Williams syndrome child: n/a

Comments:
I run The Andrew Project, an information and referral service for families with special needs children. I am currently working on a resource directory and have come to my chapter on Williams Syndrome. The book is composed of organizations that help the amilies of these children. If you know of any organizations that you feel should be included in this chapter, please let me know via e-mail with their name and contact information. I currently have the WS Association, WS Foundation and the Lili Claire F undation. I would also be honored if you would take some time to check out our resource directory on the web and sign our guestbook letting us know what you thought of our site.

Liz - 11/17/98 16:10:45
My Email:[email protected]
Name of your Williams syndrome child: Madison
Age of your Williams syndrome child: 4 months

Comments:
Our daughter was just diagnosed last week with WS. We are looking for any information right now to help us deal with this. She acts like any other 4 month old right now so we are hopeful that it will be mild. Would like to hear from other parents.

LIZ - 11/17/98 15:47:21
My Email:[email protected]
Name of your Williams syndrome child: MADISON
Age of your Williams syndrome child: 4 MONTHS

Comments:


LORRIE HORST - 11/17/98 15:37:05
My URL:http://[email protected]
My Email:[email protected]
Name of your Williams syndrome child: JASMINE

Comments:
I AM LOOKING FOR ANY INFO ON WILLIAMS SYNDROME THAT I CAM GET SO MY OTHER CHILDREN (6) CAN BETTER UNDERSTAND THEIR BABY SISTER.

Franz Stumpf - 11/10/98 21:15:20
My Email:[email protected]
Name of your Williams syndrome child: Lauren
Age of your Williams syndrome child: 4 years old

Comments:
My daughter was diagnosed as a "Failure-to-thrive" baby when she was 3 months old. The pediatrician we saw at that time was very uncaring so we changed to a new one. After the second visit the new doctor told us that it looked like my daughter had WS. he told us about the physical characteristics which she had read in a medical journal. We were referred to the Children's Hospital in Buffalo to a group specializing in the syndrome. At 6 months old she was given the FISH test, which came back negative. Nevertheless, both the pediatrician and specialists agreed that our daughter had WS. She had many eating problems such as Laryngomalacia, which is an extra flap in her larnyx causing a gag-reflex when she attempted to swallow anything. At the age of 1 ear, we started her in the Early Intervention program, which was the best thing we could have done. She still receives therapy: physical, occupational, and social interaction. At the present time she is still unable to walk independently. She has ortho ic braces and a walker which are also used in therapy sessions. We were given the use of a Riftin Chair which is designed for physically handicapped children. Due to her eating disorders she was using Pediasure as a nutritional supplement. More recentl she was switched to Peptamen Jr. because of milk-based allergies. I strongly encourage any parent with a WS child to enroll in the Early Intervention Program and also check out the SSA. They will aid you by giving your child SSD, due to the disability f WS, and they should also give your child Medicaid insurance.

Shawna Shinault - 11/09/98 19:42:28
My Email:[email protected]
Name of your Williams syndrome child: Rachel Shinault
Age of your Williams syndrome child: 6 years old

Comments:
I am glad I found this web site. Thank you for soing it. I would be interested in reaching other families by email, phone,or mail

LAURA PAYNE - 10/25/98 16:15:13
My Email:[email protected]
Name of your Williams syndrome child: NICHOLAS
Age of your Williams syndrome child: 9 MONTHS

Comments:
Nicholas was diagnosed w/WS in July '98 at the age of 6 months. It was heart breaking but we are dealing w/it. I encourage anyone with a disabled child to get enrolled in the early intervention program in your area. If you haven't heard of it, ask you ediatrician. It's state and federally funded so it doesn't cost you anything and the child can be in the program until the age of three. The earlier you get involved, the better.

- 10/23/98 23:30:37

Comments:


Estelle Jacobs - 10/22/98 12:02:35
My Email:[email protected]
Name of your Williams syndrome child: Lourens

Comments:
I have written before and would just like to say that we did have the FISH TEST done and it turned out to be positive. Lourens is doing very well and we are so proud of him!! Would like to communicate with parents of other WS children.

Teresa Beasley - 10/22/98 01:52:54
My Email:[email protected]
Name of your Williams syndrome child: Jerry
Age of your Williams syndrome child: 16 months

Comments:
Jerry was diagnosed at 7 months of age. While I was concerned I took the news calmly. I thanked God it was nothing fatal or life threatening. So far he has done pretty well. He has aeorta stenosis and has recently experience a slow down in growth but is d ing well. He still has problems eating foods with texture, any ideas? I would love to communicate with other families with WS members.

Calvin V. Nickell - 10/21/98 03:03:09
My Email:[email protected]
Name of your Williams syndrome child: Afton Earl Nickell
Age of your Williams syndrome child: 11

Comments:


lana Bradley - 10/13/98 03:11:18
My Email:[email protected]

Comments:
I am an occupational therapy student and seen a special on tv about williams syndrome. i found it to be very interesting and decided to do my paper on the disorder. I hope in the future I can be of assistance in helping these children. I have learned so m ch by investigating . I believe children are the heart of the world and there my specility will lie, helping children. Thank you for letting me visit your site. there is always hope when we don't have anything else.

Horst Romm - 10/07/98 21:09:17
My URL:http://home.t-online.de/home/horst.romm/homepage.htm
My Email:[email protected]
Name of your Williams syndrome child: Gesa

Comments:
We live in southern part of Germany and are in contact with several families in the surroundig area. Thank you very much for your engagement to informe us with actual literature.

Zac and Lynn SMITH - 10/07/98 08:28:26
My Email:[email protected]
Name of your Williams syndrome child: ERIN
Age of your Williams syndrome child: 14Years and 9 months - Date of Birth - 10th January 1984

Comments:
For those families who have access to this wonderful mode of communication - soak it all up! It may appear daunting and sometimes feelings of apprehension in regard to your future as a parent of a child with special needs - BUT wtih the support that is av ilable through the Internet and in particular the WS Listserve, - there will always be an answer too your many questions.

Ingrid Schubert - 10/06/98 13:29:51
My Email:[email protected]
Name of your Williams syndrome child: Zoe
Age of your Williams syndrome child: 15

Comments:
We live in Australia and have a 15 year old daughter with WS, Great site - thanks

cathryn mindel - 10/03/98 16:07:52
My Email:[email protected]
Name of your Williams syndrome child: eric
Age of your Williams syndrome child: 3 months

Comments:
my son was diagnosed with williams syndrome just last week.my husband and i are devastated by this news.i would like infomation on infants with williams.i also would like to talk with other parents with infants or small children. thank you.

Vali - 09/26/98 02:49:17
My Email:[email protected]
Name of your Williams syndrome child: Tiara

Comments:
After seeing 6o minutes on WS my husband and I looked at each other and said thats Tia. He got on the internet the next day and found alot on WS. Took her to our doctor she sent us to a Geneticist . She said that Tia did not have enough of the facial feat res but she would do the FISH test for us.The test was positive and the were very humble. I am helping the doctors to help my daughter. Thank you for listening

Janet Giessman - 09/25/98 18:42:50
My Email:[email protected]
Name of your Williams syndrome child: Valerie Sanders.

Comments:
Just noticed that I failed to mention the name of the program that was on PBS. It was Oiver Sacks "TIME TRAVELER" In four parts. THANK yOU. Mrs. Giessman

Janet Giessman - 09/25/98 18:40:55
My Email:[email protected]
Name of your Williams syndrome child: Valerie Sanders.

Comments:


Janet Giessman - 09/25/98 18:39:21
My Email:[email protected]
Name of your Williams syndrome child: Valerie Sanders.

Comments:
My granddaughter is being seen by a doctor for this syndrome on Monday. She is already being treated for many of the symptoms. We also saw a portion of the PBS program and need to know how we can get a tape. Local station does not have it on tape. Can you help us find the tape and we would be grateful of any additional information Thank You Janet Giessman

Cheryl McCurry - 09/24/98 14:47:04
My Email:[email protected]
Name of your Williams syndrome child: Missy
Age of your Williams syndrome child: 37

Comments:
Need information about "familial" form of WS. This info came with the lab report. I thought it was not hereditary. Please inform. Thank you

laurie harbour - 09/23/98 17:41:27
My Email:[email protected]

Comments:
I am a graduate student at The University of Texas at San Antonio who is collecting information on Williams Syndrome in preparation for a Residential Music Academy and Research Center. The Board of Regents has agreed to give the Williams Syndrome Foundat on a long-term lease on the campus. The goal is to begin construction by the year 2001. I will also be working on constructing a data base. Perhaps we can work together.

Bruce Schenemann - 09/19/98 14:03:17
My Email:[email protected]
Name of your Williams syndrome child: Stephanie
Age of your Williams syndrome child: 16

Comments:
The other night I watched a program on PBS dedicated to the subject of Williams Syndrome. Would like to know how to get a copy. I would have taped it had known it would be on, just came accross it. Thankyou

Kathy Anderson - 09/18/98 21:43:28
My URL:http://[email protected]
My Email:[email protected]
Name of your Williams syndrome child: Ava Altom

Comments:
The child who is pictured here looks like my daughter. I got a diagnosis of WS one week ago and I'm still reeling from it. I would love to speak with the mother of a little girl like mine.

sandra brooks - 09/16/98 23:30:10
My URL:http://[email protected]
My Email:[email protected]

Comments:
I just wanted to say i think about working with children alot. I am a long distance operator with ATT. I saw your program on tv about williams syndrome. They made me smile!!!

TERESA BEASLEY - 09/13/98 02:05:21
Name of your Williams syndrome child: JERRY
Age of your Williams syndrome child: 15 MONTHS

Comments:
THANKS FOR THE INFORMATION, AS A PARENT OF A CHILD WITH WS I HAVE GOTTEN MUCH COMFORT FROM BEING ABLE TO GET MUCH NEEDED INFO FROM SITES LIKE THIS.

Cindy - 09/08/98 13:33:57 My URL:http://www.0001011.com/users/cindy My Email:[email protected] comment: Nice page.... please come visit my 0001011 site :-) Thanks, Cindy

Comments:

Phil Smith - 08/28/98 09:44:53
My URL:http://www.drdisk.com.hk
My Email:[email protected]
Name of your Williams syndrome child: Nina
Age of your Williams syndrome child: 5 years 4 months

Comments:
Our WS is currently self-diagnosed. We expect FISH test results by end September. We've learned a lot form the WS listserv and WSA page and I have now bookmarked your page so I can follow up a lot of your links next weekend.

Laura Kahrilas - 08/28/98 05:16:04
My Email:[email protected]
Name of your Williams syndrome child: Trent
Age of your Williams syndrome child: 8 months

Comments:
I would love to chat with those of you with a similar age child as mine. Thanks for a great resource!

SALLY CAMPBELL - 08/19/98 11:13:40
My Email:[email protected]
Name of your Williams syndrome child: SARAH
Age of your Williams syndrome child: 2 YEARS

Comments:
JUST NEW AT THIS WILLIAMS SYNDROME NEED ALL THE HELP I CAN GET!!!!!

Luis Gir�n - 08/06/98 19:56:45
My Email:[email protected]
Name of your Williams syndrome child: Anthony Gir�n
Age of your Williams syndrome child: 1 a�o

Comments:
Deseo comunicarme con cualquier otra familia que tenga un hijo con Sindrome de Williams para que nos ayuden a comprender mejor el problema de mi hijo. Yo vivo en la ciudad de Guatemala. Aqu� en mi pais existe muy poca informaci�n sobre este problema. Mi e posa y yo deseamos saber mas sobre este sindrome para poder ayudar a nuestro hijo. Por favor escribanos alguien al siguiente Email: [email protected] Muchas gracias....

John Lam - 08/04/98 06:46:48
My Email:[email protected]
Name of your Williams syndrome child: Rebecca
Age of your Williams syndrome child: 5 mths

Comments:
Rebecca have just been diagnose with WS. My wife and I are still adjusting to the news. We find the info here and other websites very useful. We hope to communicate with other parents and share info. on the syndrome. Please help.

Luis Alfredo Gir�n - 07/30/98 00:27:14
My Email:[email protected]
Name of your Williams syndrome child: Anthony Alfredo Gir�n Cruz
Age of your Williams syndrome child: 1 a�o

Comments:
Por favor necesito el Imail de otras familias que tengan un hijo con Sindrome de Williams para pedirles consejos y compartir experiencias porque yo se todavia muy poco sobre el problema de mi hijo. Yo vivo en Guatemala y hace 4 meses el doctor le diagnostic� Sindrome de Williams a mi hijo Anthony. POR FAVOR AYUDEME ALGUIEN POR EL AMOR DE DIOS!!!! Muchas Gracias. Luis Gir�n. Please I need the Imail other familys with a child with Williams Syndrome. I have a son with the same problem he have 1 year old and I need information about this. I live in Guatemala. PLEASE SOMEBARY HELP MY!!! DON'T LIVE ME ALONE!!! IN THIS MOMENT I NEED SO MUCH HELP....!!!! My imail is: [email protected] Thank you so much....

Cheri Gioe - 07/22/98 23:44:06
My Email:[email protected]

Comments:
I direct a child care center and have a child with William's Syndrome enrolled. I am searching for information.

Luis Alfredo Gir�n Ortiz - 07/21/98 00:41:16
Name of your Williams syndrome child: Anthony Alfredo Gir�n Cruz
Age of your Williams syndrome child: 12 meses

Comments:
Por Favor Atiendanme: Hace 2 meses el doctor diagnostic� Sindrome de Williams a mi hijo Anthony. No se qu� hacer. Por Favor algui�n escribame a:37 Calle A 33-97 Zona 7 Col.Sakerty I Guatemala,Guatemala 01007. Aqu� en mi pais existe muy poca informaci�n mi esposa y yo estamos !Desesperados!. No tengo Email. Entr� al Internet a escondidas en mi trabajo. Que Dios bendiga a quien lea este mensaje.

Jennifer Thompson - 07/20/98 02:30:22
My Email:[email protected]
Name of your Williams syndrome child: Kiah
Age of your Williams syndrome child: 9 years

Comments:
My daughter was diagnosed at 12months with William's Syndrome. Fortunately we are extremely lucky in that Kiah has the condition only mildly. AFter blood tests were performed, it was found she is among the 4% of the Williams Syndrome population who do n t have the micro deletion of the elastin gene. She attends a normal school, but has been experiencing some academic problems over the last few years. She has just been commenced on Dexamphetamine for ADD symptoms. I would be extremely interested to hear from anyone who has child suffering from this syndrome. Jennifer Thompson

Jennifer Thompson - 07/20/98 02:25:25
My Email:[email protected]
Name of your Williams syndrome child: Kiah
Age of your Williams syndrome child: 9 years

Comments:
My daughter was diagnosed at 12months with William's Syndrome. Fortunately we are extremely lucky in that Kiah has the condition only mildly. AFter blood tests were performed, it was found she is among the 4% of the Williams Syndrome population who do n t have the micro deletion of the elastin gene. She attends a normal school, but has been experiencing some academic problems over the last few years. She has just been commenced on Dexamphetamine for ADD symptoms. I would be extremely interested to hear from anyone who has child suffering from this syndrome. Jennifer Thompson

- 07/09/98 21:55:45

Comments:


Francis Hartley - 06/04/98 21:24:29
My Email:[email protected]
Name of your Williams syndrome child: Adam
Age of your Williams syndrome child: 8 years

Comments:
its good to find a site that families can pass on info to each other where as it is normally very hard to get hold of.love and best wishes to all w.s. families.

Bill Brunner - 05/26/98 03:33:28
My Email:[email protected]
Name of your Williams syndrome child: Ty
Age of your Williams syndrome child: 2-1/2

Comments:
Ty was diagnosed with WS at 15 mos. since that time we have learned an awful lot about WS. Mostly right here on the net. One thing we learned on our own however was that most Doctors don't know much about WS. The day we went in for the results of the FISH test we were handed a packet of papers gotten off the internet, most of which we'd already seen. As a result, we have learned to do our own research, and supply our pediatrician with up to date information that will help with the medical treatment he need to prescribe for Ty. This page is a big help to us in that regard! Thanks, Bill Brunner

Gina Pursley - 05/22/98 17:36:05
My Email:ZippySHJ
Name of your Williams syndrome child: Jordan
Age of your Williams syndrome child: 2 1/4

Comments:
Our daughter was recently diagnosed with WS, after being undiagnosed with CP. She is the sweetest little girl. She is a twin. Jordan received five therapies a week and is doing great. We still are learning about WS. When I ask if she will be mentally impaired, everyone says, "WS kids are quirky." Would other parents share with me what they have experienced with their child. I am very curious and want to do what is best for Jordan. I am a home mom without family around living in a new area. I would love to chat.

Cheryl Balcom - 05/21/98 19:16:47
My Email:[email protected]
Name of your Williams syndrome child: Courtney Renee
Age of your Williams syndrome child: 8 1/2 months

Comments:
Our daughter was just diagnosed within the last week. I'm excited to learn more about Williams Syndrome and I'm so glad there is all this information on the internet!! Would like more info on Williams Syndrome in infants and very young children. Thank Y u!!

Olivia Murray - 05/11/98 22:11:50
My URL:http://www.iol.ie/~moylans
My Email:[email protected]
Name of your Williams syndrome child: Patricia Moylan
Age of your Williams syndrome child: 9 years 10 months

Comments:
I check this site regularly for the latest on Williams from Medline - thanks for providing it.

Jennifer & Brent Ward - 04/22/98 04:13:54
My Email:[email protected]
Name of your Williams syndrome child: Keelan
Age of your Williams syndrome child: 16 months

Comments:
Keelan was diagnosed with Williams at around 3-4 months old. Only by chance, as we had to take him to Perth from Broome to have a hernia operation. The cardiologist picked up on Keelans symptoms and behaviour and suggested that he may be "Williams". It was a big blur back then but heaps easier to accept when we had a reason for how Keelan was. Now he is a cheeky little boy who is endearing to everyone. Would love to talk to other parents.

Dorothy Littlehales - 04/18/98 03:55:32
My Email:[email protected]
Name of your Williams syndrome child: William Justin
Age of your Williams syndrome child: 26 years

Comments:
Hello from Australia, My son was not diagnosed until 7 years old, It is wonderful there is now so much more information available to hopefully help support parents

Sue Snoots - 04/16/98 11:34:04
My Email:[email protected]
Name of your Williams syndrome child: Shawn Lee
Age of your Williams syndrome child: 26years

Comments:
Thanks for the wonderful website!!

Mark and Melodee Sanders - 03/27/98 20:04:23
My Email:[email protected]
Name of your Williams syndrome child: Matthew

Comments:
I appreciate all of your efforts on this web page. It contains a lot of good information. We have found the internet to be an excellent source of gathering and sharing information. Knowledge is power. Thank you, Mark and Melodee

- 03/23/98 14:38:19

Comments:


Lynne Sebille-White - 03/19/98 07:04:56
My Email:[email protected]
Name of your Williams syndrome child: Lauren White

Comments:
We just purchased a computer and are loving all this info. on the internet about WS. Keep up the great work!

Jackie McPherson - 03/11/98 00:14:07
My Email:[email protected]
Name of your Williams syndrome child: Bryonie

Comments:
My child was diagnosed with WS 6 months ago, and it was and still is very hard to accept. While I always knew something was not quite right, Doctors thought I was over reacting. So now she has just started school and has fitted in well. Anyone wanting to have a 'chat', please do so. Jackie

Jackie McPherson - 03/11/98 00:11:11
My Email:[email protected]
Name of your Williams syndrome child: Bryonie

Comments:
My child was diagnosed with WS 6 months ago, and it was and still is very hard to accept. While I always knew something was not quite right, Doctors thought I was over reacting. So now she has just started school and has fitted in well. Anyone wanting to have a 'chat', please do so. Jackie

Kim - 03/07/98 06:32:37
My Email:[email protected]
Name of your Williams syndrome child: Joey
Age of your Williams syndrome child: 8 years

Comments:
My son was diagnosed when he was 3 months old.He is a great kid and I am glad that I chose to sstick it out through the first 6 months.It was very very hard and I was young.It hasn't been easy but wellworth it.The hardest for me is to accept the way he ha been dealt with the last 2 years of school.The teacher for lack of knowledge has not given him the opportunity to be the best he can. I homeschool him now and he is reading and trying to write which is difficult.He will be re-evaluated and put back into chool that has an appropiate program for him>I would like to find a pen-pal for him if anyone knows where to find one please let me know! thank you.

Susan Summers - 03/03/98 22:00:47
My Email:[email protected]

Comments:
I have a 20 year old daughter. We have searched for an answere to her problems since she was 1 month old. Recently, I found an organization called NLD and have ordered and received information from them today. In a quick read through I found Williams s ndrome. This sure sound like our child. This syndrome was never mentioned to me and we went throught Genetic counseling twice with her. We are currently seeing a cardiologist because of a fainting spell she had while exercising. They are mentioning th possibility of pulmonary hypertension. We will be doing more testing within the next month. Can you provide us with any information? Thank you.

ESTELLE JACOBS - 02/25/98 12:31:29
My Email:[email protected]
Name of your Williams syndrome child: LOURENS JACOBS
Age of your Williams syndrome child: 2 YEARS

Comments:
We live in South Africa, and here we do not have a lot of information about Williams Syndrome. I have been told that my child has Williams Syndrome, but they cant diagnose him for sure because he is "not old enough to be diagnosed" according to my pedia rician. I am in desperate need to find information to help me & my husband accept this fact & go on with our live . It is very hard for parents to be given a "bombshell" like this about your child you have thought to be normal for more than a year, and ot being able to get the answers to the many questions that you ask. More like walking into a solid wall. This has been the best information I could get after a year. There are no support groups here, neither are the the bloodtests that are spoken of o help with the diagnosis. I would love to know for sure what is wrong with my child, but here nobody can give me any answers. He was diagnosed with having a Ventricle Ceptum Defect & Atrium Ceptum Defect, but this has closed when he was about 15 months old. He was also diagnosed with Hyperthyroidism, a have been on Eltroxin since he was 5 months old. He weighs 11.14Kg, a his lenght is 82Cm. Could somebody please contact me to give me some more info ?

Maria Sciberras - 02/22/98 20:02:34
My Email:[email protected]
Name of your Williams syndrome child: Lisa
Age of your Williams syndrome child: 2 years 9 months

Comments:
I am an Early Intervention educator, and I work with children with special needs. I am from Malta which is a relatively small community. I am currently seeing a child with William's Syndrome, and until very recently I knew nothing about this condition. Thank-you very much for putting out such info on the net !!