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Thanks again,
Meg and Beth.
I can’t download your booklet, Can you please mail it to me?
Your website was very eye opening. My son has a friend with WS and I want to help her all I can. As you said they are quite lovable. I learned so much from you and your experiences with your sister. God bless you for you love and care for her.
Hello Betty,
I’m sorry that you haven’t been able to download the booklet. I am sending a copy of it to you by email. Do let us know what you think of it and perhaps the parents of your son’s friend might find our site useful too.
Thankyou so much for your comments. Caring for Linda has its trials and tribulations now and again, but also so many smiles that we definitely wouldn’t have it any other way.
Do drop by the site again and keep in contact.
Beth
HI Meg I am not too computer savy. I do know how to read email, lol. My daughter just got told that it is possible that her two year old may have William’s desease. She has some symptoms but she is to see a Dr. soon who will check to see if it is true. I would like to know if they can tell by doing a blood test. I feel so badly for my daughter Amanda because the baby Dr. showed her a pic. of a very retarded looking baby’s face which our Charlotte does not have. She does a stiffening of her legs and has since new born that never has looked normal to me and she gets a far off look like in a seizure. I kept wanting Drs. to take heed of that but they seemed to not know what it was. She has been having speech theropy and now talks so well it is amazing but she does not answer a question. She will ask one though. She is only two and I think they expect so much from her , these theropists. She is very tiny and that alarms us all. She has such tiny arms and legs. She weighs 20 lbs . now at age two. She has only been two a few months. My daughter is pg. for another baby and that doubles all our concerns. We do not know one thing about this desease other than what I have gotten off line today. Sinserely , Karen Hardy
Hi Meg, Our Daughter Jordan Grace is 5yrs old and was diagnosed with w/s @ 1yr old by a blood test= genetic test called the FISH TEST along with photo’s of her .
She didn’t move much in the belly, induced at 38weeks due to being small and not growing . As soon as she was born , we thought she looked different ( like a little pixie ). She was sick for the first year and tube fed due to poor eating and failure to thrive, didn’t make any of the normal milestones and always had reflux and belly aches.
Since being diagnosed and with lots of research we have educated ourselves and our doctors . Jordan will need open heart surgery in the future as it is common with w/s to have a heart defect , now saying that most of them will lead a full happy life . They do need to be monitered for blood pressure, urine infections , calcuim deposits on the kidneys.
Jordan is now 5 and @ school , a great happy kid who has some xtra needs ( sensitive hearing , anxiety, Mentally delayed, scared of heights ) but she has brought so much joy to our family and every one she meets, just a lil love bug who talks exteremly well as it seems to hide her struggles, loves life and enjoys a few tantrums.LOL
We’re in the Northern Territory, Australia, but are happy to help out with any concerns you may have to the best of our ability.
My best advice is to educate you and your family and then it isn’t so scary and you can really start to help and understand this precious little princess.
One thing I have learn’t through our experience is “always trust your instinct” and run with it , MAKE the medical team listen to your concerns !.
Hope this helped. cheers Scott & Jackie.
Sorry your newsletter would not download,just a load of gobbleygook. Maybe you could email me it. My daughter Amanda is 35 and we have known she was williams since she was 13.
On it’s way Jean!
I wasn’t able to download the booklet could you pls email it to me
thanks
Alan Kaufman
12 Burton Street
Arlington Massachusetts 02476
thanks!!!!
On its way!!
Our blessed,Granddaughter Alyssa(9)w/WS has us (both elderly & disabled CHF & other w/RSDS) & Mother(33)legally blind & partial deaf(lives w/staph infection prob) Also family of VERY poor backs all w/several operations & diabetes.Alyssa sees Drs. @ Little Rock, AR. Childrens Hosp. PROBLEM; local school Liberty Eyleu (suburb of Texarkana, TX)failure to recognize anything other than “behavioral” problems. (All schools seem so bent on teaching kids only how to take ‘the test’~to fulfill their “numbers passed on” syndrome)And all they seem to suggest is “Special Education Classes”. NOT happening ! And as fore mentioned, we aren’t able to ‘home school’ admittedly. What to do ? .In Christ we trust & love, NanaK
The cardiologist told me monday they want to test for WS. I had never heard of it before but in reading online I do believe he does in fact have Williams Syndrome. I am looking forward to any and all information and perspective you can provide 🙂