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LianneF Message
1 Aug 2014, 11:10 AM

Hi my name is Lianne, i have just joined & my 6 yr old daughter is the one with the duplication of 16p13.11. Would love to chat. Many thanks.
niffinoni Message
18 Sep 2014, 07:09 PM

Hi, we have a 4 year old daughter Dollee who was diagnosed 2 years ago. We are really interested in comparing notes for want of a better word. We are really struggling with getting information about it and the effects both physically and mentally. I'm Toni and Simon is my other half. Dollee is the baby of 7, 5 girls and 2 boy's. We are really hoping to hear from you soon x
hwagon Message
19 Sep 2014, 04:25 PM

Hi! I'm Holly. Our daughter, Autumn,age 4 1/2, was diagnosed a couple of years ago. The lack of case studies is frustrating. We have very little information to help us know what to expect. So far, she has been seen by specialists for orthopedics, urology, cardiology, neuro, hearing & something else, but I can't remember. She was seen by genetics once, for diagnosis, but hasn't been seen by them since. She is very tiny. We celebrated this spring when she finally made it onto the growth chart for height. lol Until then, she was always -3 to -5% for height. :-) She is in special ed. & gets speech therapy, pt & ot. I wish I had more info on the actual genetics to give you an outlook, but her geneticist had only one other case study for comparison. There isn't much to go on.
JessicaDuhon Message
19 Aug 2015, 02:45 PM

Hello I have just recently found out my 7 yr old son has 16p13.11 diagnosis, I have information about him and would love to compare note, he also has a diagnosis of short stature and he is currently on growth hormones, he sees a child therapist he is very emotionally unstable, they are going to start testing him for other pycosocial disorders. he has two birth defects, Ventricular megaly and no primary teeth for his bottom two teeth, he is a very loving child he is just highly emotional.