wnyc.org / 93.9fm / am 820

It is nice to read about other peoples experineces with ws. My grandson also over produces calcium in his system, to other people have that symptom

To Gretchen Bratton, thank you for responding I will contact you for your resources, thank you.

i have a 38 year old son with ws; he lives in a group residence nearby which is wonderful except it doesn't afford him too many social options except those that exist within the sponsoring agency....he would LOVE to meet friend in the area (rockland county, ny and bergen county, nj).

he is a wonderful guy and i'll leave at that!!!!!

i wanted to tell the parent who wrote in ... that adult onset anxiety and depression are characteristic of the syndrome, i believe, and my son is on medication for these conditions.

To Laura in Astoria, I live in Longview, WA. Not too far from you. Please look me up for any resources. My 3 year old daughter was diagnosed over a year ago, and I recomend to everyone to sign up to be a member of the Williams Syndrome Association. www.williams-syndrome.org They will put you in touch with others in your area. It is a great tool for teachers, doctors and any one who has been touched by WS.

My 1 year old grandson was diagnosed with Williams Syndrome 2 days ago, it is such a blessing that DR. Marc Houston, was working at CMH and sent him to Dornbechers Children Hospital in Portland,OR. If you want to add a resource, I would highly recommend Dornbecher's if you want a peace of mind, everyone that I met on the team is exceptional. I now have a peace of mind that my grandson will be able to live up to his potential, and beyond with being diagnosed. Thank you Dr. Houston, you are my angel.

I have a 20 year old granddaughter that was diagosed with Williams Syndrome when, she had to have heart surgery at 16 months old. It was so interesting & informative to hear all the comments from so many locations. Thank you all, and The Leonard Lopate Show! I am like so many others - don't know anyone else in my area with Williams Syndrome, and my grandaughter is so lonely for a friend (young lady or young man). It's sad to say, but most young people that don't have Williams Syndrome love our grandaughter, but as far, as going out or to movies, or bowling, etc. - these young people kind of go their own way. Would like to know more about social activities in this area for WS Children her age & meet other parents or grandparents with WS children about her age so we could discuss concerns & joys of our children. Thank you for sharing.
Rebecca Carter

my daughter was diagnosed at the age of 3 years she had many problems with gaining weight and she has a heart murmur, also she has one kidney. we have not meant anyone with ws but we went to the childrens hospital in boston and they were alot of help but right now i am trying to get her in a ws camp but i need more info

What a great show I too have a special friend I met on line three years ago who has WS. She is 20 and Im 38 yes its sounds a bit odd but this girl has brought joy and happyness into my life I have met her a few times she and her mom come to stay with me, I just love her and her mom. Andrea is so special to me I couldnt amagine my life with out her, always puts a smile on my face and always wishes me well. And yes her HUGGS are the best.

Hi,
I only recently heard of Williams Syndrome and really apreciate Richie's honesty transitioning into adulthood. We've had a very tough year with that as well...My 20 year old son hadn't been tested for W.S., but has the classic "Williams Syndrome" personality. Dr.'s have allows made him exstremely anxious, which can make getting him the support he is needing very challenging. Like others have requested, I wonderful hearing how Richie's survived transitioning and is now grow stronger through his struggles. Feel free to email me. Thanks again.

I just wanted to say that the two young guests on your show who have Williams Syndrome were absolutely charming. My 6 yr old son Robyn was diagnosed with Williams Syndrome when he was 4. I am still learning not only about the condition but also about my son who is able to share more and more about himself as his communication skills improve. I can't wait to learn more about his thoughts and feelings as he grows older. He is a delight and a total joy and our family is lucky to have him in our lives!! Hearing Richie Rosen and Kelley Martin talk about their lives was wonderful-- I feel as if I got a glimpse into the future for my son and I thank you for doing this show.

Hi, my daughter is 23years old and was diagnosed with williams syndrome when she was five years at Montefiore Hosptal,Bronx NY. she is doing well, she graduated high school in 2005.we are blessed.she is a delight to be with. We have never met any one else that has WS.

I think my daughter may have WS. We are in the process of diagnosing her. Your guests sound like my 7 year old! What a GREAT program...thank you.

My daughter Macey is so sweet, fun, and funny. I cannot imagine her any other way. Her syndrome makes her endearing, vulnerable, and loveable. I ADORE HER AND FEEL PRIVILEGED TO HAVE HER AS MY DAUGHTER!!

I just finished listening to your program interviewing these remarkable young people with WS as well as Dr.Pober. What a blessing to hear them speak and give their views on their lives. The Lord has blessed me with a beautiful grandson with WS and I do say "blessed" because I have already seen how he has changed our families lives. I always say my grandson is exactly who God created him to be.We know the future is uncertain but I know he will teach many around him compassion as we walk through this journey. Times are not always easy and there will be trials but with God's grace we will be blessed .

I have a daughter with WS and I'm concerned when she gets her period is there anything available to stop her from getting her period???

My 16 month old daughter was just diagnosed with WS. This is difficult, but now we know. She does not like to eat (only gerber puffs). She began P.T. @ 10 months and has made great progress and is walking now! She is a beautiful joy! We are so proud of her no matter what.
Thanks for having your show, any info helps.

My 13 year old son has WS and is my pure joy in life. I would love to know if there is anyone in our area that is blessed like us and would like to get together to share a friendship.

I SAT IN FRONT OF THE COMPUTER LISTENING TO THE SHOW AND I WAS SO EXCITED BECAUSE I HAVE A 6 YEAR OLD DAUGHTER WITH WS AND I DONT KNOW ANYONE ELSE THAT HAS IT.TO HEAR ABOUT OTHERS WITH IT AND ACTUALLY HEARING PEOPLE WITH WS IS ABSOLUTELY GREAT

THANX MUCH
YOLANDA G.(MOM)

my son Cody was diagnosed with william syndrome when he was 2 weeks old and now is 1 years old. i am truely blessed to have such a special child in my life. He is currently seeing a speech pathologist and a physical therapist and is doing very well. i am very proud of him and watching him do different things is amazing! i could never had a better baby and i love him with all my heart!

I have a 6 yr old grandson named Brandon with WS. He was diagnosed at 4 weeks old. He is very special and loved by our whole family. He is amazing. When I visited his school, when walking down the hall,everyone knew him and spoke to him. His friendly personality is so contagious. Bless his heart, he has had several surgeries and is always so happy. My daughter and her husband are so dedicated in providing him the best care. We plan to attend the WS Conf in Anahiem this year.

My granddaughter, Gracie Rose, was diagnosed with WS when she was 4 months old. We were very fortunate that my daughter, Gracie's mom, found Dr. Pober. With her help Gracie is doing great now. Thank you to Dr. Pober for taking Gracie as your patient. She is 13 months now and still has alot of problems with eating but she is growing and smiling.

Thank you so much for the show. I think more people need to know and learn about WS. I 2 yr old son was diagnosed at 15 months. He is doing great and is a very lovable boy.

We have a WS clinic in Louisville, so we are very lucky to have help. If anyone needs to talk, please e-mail me at dawn.hundley@insightbb.com

Thanks again for the show.

Thank you for spredading the news about william syydrome. i hope more people know about us.

My 4 year old son Daniel has ws. He was diagnosed when he was 3yrs. old. We have beeen
blessed with an angel full of life and joy. Daniel recently started specail education; and is doing really well. It has been an overwhelming year for us. We are donig our best to fullfill his life with love and understanding. He turns evey tear into smiles. We love him!!!!!!!!!

My daughter Victoria was diagnosed with WS when she was 7 months old. We have been blessed to have such a beautiful and happy baby. We were blessed again today on Christmas Eve when she took her first steps on her own. She's almost 18 months so seeing her walk so soon was exciting. Thank you WNYC for spreading the word on WS. Looking forward to meeting others with WS in Anaheim, CA.

I am a 42 year old women with Williams Syndrome and I really do appreciate the fact that you have done a program on us. Hopefully, this will allow more people who might have this get diagnosed.

A Job Well Done!

my 13 year old has williams. we do not know anybody else with williams.i have lots of questions.we dont have the funds to come to your convention evey other year..mybe there is somrone in our area.

I have a 34 year old daughter with WS. She is small of stature 4'10" and weighs around 80lbs. She has developed psychiatric problems in the past 10 years. Anyone with additional information appreciated.

It was nice to hear more info about ws. It would be nice if you can print more info in baby talk magazine, i have a son with ws he's 31 month old. He does loves music he doesn't walk by him self yet. I love him he's adorible baby.

Just listened to your show and Barbara Pober, who diagnosed our 42-year old daughter, Heather, with Williams syndrome in October 2005, 3 months before she was diagnosed with Stage III ovarian cancer. Thanks to Barbara who discussed anesthesia and potential risks with the doctors treating Heather, and other amazing doctors, Heather survived her operation and 6 months of chemo and is in remission 1 year later. Now, Barbara is reviewing Heather's journal about her experience, which we are trying to publish. Williams people are lucky to have an advocate like Barbara.

My grandson, Noah, has Williams Syndrome. He is our angel and we have learned so much from him. He is bright, personable and loves anything involving music. He loves clocks and is an avid collector. He is 7 years old. Despite enduring multiple surgeries starting at three months old, he is thriving thanks to his devoted parents. His mom is a nurse and this has been a tremendous plus for Noah's health and development. She is a tireless advocate on his behalf in regard to his education and his health.

it was a great pleaser to hear more about ws my son is 16 months and has ws it's hard for him to do much of any thing now b/c of him being behind but to hear other speak of the great happiness of having ws make me proud to have a son with ws it gives all whole family hope and joy and too know that ppl r aware of it until now i have never heard the media have more info on the subject thank you sooo much!!!!

My son Ryan has WS. He is 12 yrs. Dr. Prober helped us alot. She is one special person.
Dr. Prober Thank You for all you do for the WS
children.

This program was definitely helpful in understanding more about Williams. I am a grandfather to a grandson who has Williams and since it was discovered he has come a long way. He is one amazing young man and i am very proud of him and his mother who has dedicated her life to lead him through the path of life. Dr. Prober must be commended on her tremendous succcess in her constant accomplishments in this area. G-d bless and thank you for your dedication.

Thank you so much for your program on Williams Syndrome. I have a 3 1/2 yr old granddaughter with WS. Her smile is so bright and beautiful. It truly lights up a room. I really appreciated the interviews of the young adults on your program. It is encouraging to hear that they are doing well, with all the obstacles they must face. Thank you again for helping to spread the word about Williams.

Thank you for doing this show on Williams Syndrome. It is a very confusing, often misunderstood disorder, even if someone has heard about it. Thank you for getting the word out and information out there about our kids and some of their abilities. They are truly special kids.

Shelia

WS ROCKS !

Thank you so much for shows like the one you did on Williams Syndrome. My granddaughter has WS and she is an absolute angel. You have never had a hug like an "Abi Hug". She is a special in a lot of ways.

Thank you for doing this show on WS. I have a four year old daughter with WS. Your show was very informative.
Thank you,
Noel Clayton
regional co-chair for the Williams syndrome Association of the Central Plains Region

HI I AM JEAN ANN I HAVE WILLIAMS SYNDROME !!! I THINK YOUR TALK SHOW WAS GRATE DR . POBER IS MY DR TOO SHE IS QUITE SPECAIL I LOVE HOW YOU DID YOUR SHOW ON WILLIAMS SYNDROME AS ONE OF THE OLDER LADIES WITH WS SHORT FOR WILLIAMS SYNDROME I QWOULD LIKE TO SAY THAT YOU DID US A WONDERFULL SERVICE BY DOING YOUR TALK SHOW I AM 58 YEARS OLD AND I AM THE OLDEST LADIE IN TEXAS!!!! THERE IS OBNE THING THAT HAS BOTHERED ME ALOT THE TV PEOPLE THINK WS IS ALL ABOUT MUSIC BUT IT IS ABOUT US AND OUR LIVES AND HOW WE LIVE THEM I CAN NOT SING BUT I SURE CAN TALK ABOUT WSAND HOW HARED MY LIFE WAS BEFOR I KNEW I HAD WS !!! THERE ARE SOO MANY DIFFERENT WAYS WE COULD TELL YOU ABOUT US AND OUR LIVES IT WOULD TAKE ALOT OF BOOKS TO READ ABOUT US !!!!BUT I THINK TALKING TO US IS MORE INPORANT !!! THANK YOU SOO MUCH FOR YOUR SHOW TALKING ABOUT WSIN A WONDERFULL WAY !!!! MISS JEAN ANN DIRKS