Our granddaughter has been diagnost with Weavers syndrome. She is 12 years old is 6feet tall and weighs over 300lbs. She is very smart in school. She is...
... Hi Alene First I would like to acknowledge the loss of your son, Kevin.. and say something sincere, I would not pretend to have empathy as I realizes to...
... Hi Greta That's really interesting I wonder if there are any other kids with Weaver syndrome with these 'birth like marks' what would you say are your...
Hi Sandy i have just read 1 of your emails and you did give something to smile at!!! yes the dreaded school uniform. I have been allocated the full grant which...
Hi Sandy i have just read 1 of your emails and you did give something to smile at!!! yes the dreaded school uniform. I have been allocated the full grant which...
Hi Sandy, It's nice to meet you. I have been reading about Nathan and understand your frustration with the clothing. Sometimes it is the little things that...
Good to hear from you. I have heard of other children with Weaver's having dental problems, Abby has had minor problems. I am working on finding a shoe...
I was interested in seeing where everyone is from and the age of the child. This can be done through the database section. I would like to see everyone add...
check online at wissotatrader.com They have large, wide and extra wide as well as narrow shoes for both men and women. We got Kendall some shoes from here...
... Hi.. I was watching TV program the other evening, it was called 'Britain's Tallest Teens' the program featured about 3 teens one of which was a girl of...
Thanks Sandy for the information on where to find some shoes for Shyanne We will surely explore the option, any info what will help our children. Shyanne was...
Hi everyone!!! I have not posted in awhile, but do read everything. I have tried shopping for shoes at zappos.com and newbalance.com and stride right.com, I...
April, I know that when we saw Dr. Weaver the first time he mentioned we should have come through the clinic to see him and not through the hospital, that way...
Thanks Greta, I look forward to hearing back from you. I did not know he(Dr Weaver) had research funding for visits...Devon has seen two geneticist here in...
April, I understand the frustration that you are seeing with Devon. Abby had that as well. She also was about three years behind in her testing, but scored...
Tomorrow we are taking Shyanne down to Jackson Memorial Hospital in Miami. Shyanne has to see some doctors before undergoing the four hour surgery Friday to...
Yes it is amazing isn't it? Good luck with that! I will pray for her...I have heard cyst are common with weaver syndrome. Anyone else's child had them? Devon...
Best Wishes to Shyanne and to you all x x x Sandy ... Tomorrow we are taking Shyanne down to Jackson Memorial Hospital in ... hour ... her ... that ... Yahoo!...
Hi all... If I may ask you all a question which I am often asked... WHEN DID YOU FIRST NOTICE 'SOME THING' WAS NOT RIGHT WITH YOUR CHILD? My answer to this...
Hi Sandy and everyone... Lorinc's weight at birth was 11.35 lbs, and he was 2'4'' tall. When he was born and start crying, maternity nurse said: what a manful...
Hi Sandy, and everyone, my experience is....around my 5th month of pregnancy. I just felt that something was wrong, and within weeks I started having problems,...
Hello. I would have to say there were some concerns at birth, for a moment, when Abby was born 5 1/2 weeks premature at a weight of 7lb 3oz. The doctors said...
Devon seen the neurologist yesterday about autonomic dysfunction...well thats what we went in for. The testing for that dysfunction is not going to happin with...
... a moment, when Abby was born 5 1/2 weeks premature at a weight of 7lb 3oz. The doctors said she would have been at least 12 or 13lbs in gone full term....
Hey Jenny, Devon was tested for Sotos also, I found that many weaver syndrome kids also have the gene mutation(?) it is NSD1 gene. Not all the sotos kids have...
... weaver syndrome kids also have the gene mutation(?) it is NSD1 gene. Not all the sotos kids have a positive in that gene testing either, so no for sure...
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