My child has an partial chromosome 16 deletion. Anyone else?

E - posted on 03/27/2013

My daughter has 16p12.1 copy number variant and I'm looking for other families with this exact same microdeletion to join a research study at Penn State. Let me know if you're interested and I'll give you the geneticist's contact. It has to be 16p12.1.

Elizabeth - posted on 03/20/2013

Hi Sarah,

I was just wondering if this is a nz support group?

Elizabeth - posted on 03/20/2013

Hi Alisha

I myself was told that with my son have 16p deletion that he is more prone to having autism as most of his symptoms have shown this. All the best :)

Elizabeth - posted on 03/20/2013

I have a 10 year old son who was diagnosed with 16p deletion im tryna find nz support groups

Sarah - posted on 02/13/2013

Justine -- I am a member of a facebook group and it has been a great resource. If you send me a friend request on Facebook (Sarah Hutchins Hawker), I will try to get you added. :)

Justine - posted on 02/13/2013

Hi there
I also have a son with the 16p deletion. I am in New Zealand. I would be very interested in joining a Face Book group if there is one. Our son is now 7 years old and his needs are growing!

Alisha - posted on 02/08/2013

i have a daughter who also has the chromosne 16 deletion and was just diagnosed with Autism...she will be 3 years old in march and she is just learning how to walk...she is not talking yet but is slowly starting to babble like how a 1 year old would do...I was just told yesterday that i also have the deletion...and im also 14 weeks pregnant with my second child and im fearing the baby will have the same deletion if not worse!.. chassie barely has any interest in foods unless it is something she really likes..if its not something she likes she will not eat it..soo right now we are fighting for her to eat during the day her fave food right now is yogart and she also has sensory issues.....It now makes sence on my up bringing with fighting with obessity and early child hood depression...and also learning disabilitys in school where i never completed.... i just would like to talk with moms who have the same issues and how to cope...if you want you can add me to facebook my name on there is alisha dawn please send me a msg explaing who you are...TIA

alisha

Cherie - posted on 01/31/2013

Hi, I have a 7 yrs old & it's been 2 years since we found out.. As of now we don't know anybody else with this rare disorder. She has 16p12.1 & I was tested but don't have it.. She's doing real good in school . She has had 3 knee surgeries & has just this pass year been told she has JRA so please is anyone else going through this I would really love some help!!!

Cherie - posted on 01/31/2013

Hi, Jaimi I have a daughter that has 16p12.1

Samantha - posted on 10/29/2012

have been gettin a bit more info now but still feel that my daughter been given the run around everything gets put down to the deletion but what if not she is a year old now and weighs the same as a 1 month old shes now talking but can not sit stand or hold her head unaided x

Kenia - posted on 10/14/2012

Hi im new. my daughter has deletion of the 16q23.3 would to meet someone else who's child has the same deletion

Shannon - posted on 09/07/2012

My daughter was diagnosed with that today. It answer so many questions, but opens up so many others.

Heather - posted on 07/14/2012

My son has 16p 11.2 Deletion. I am learning that this affects every person differently. I also have 16p11.2 deletion. I just found out yesterday. My son and I are the opposite of each other. As he struggles with failure to thrive, I struggled with childhood obesity and I still struggle with my weight now. I am also a type 2 Diabetic. My son is on the verge of getting a G-tube because he doesn't eat much. Now that I know that I have it, it has answered a lot of ?'s bout me. I struggle from depression and I did as a child. I always just felt like something wasn't right. My son and I do not have autism. He is super smart and plays video games at 3. He did have some delays when he was younger. Took him longer to sit up and walk. He started walking at 18 months. As for myself I did struggle in school some, but my problem as a child was more social skills. I was shy and was in a program for it. This syndrome also has to do with the social skills. My son is very shy to other people as well. Took him 18 months just to get use to his grandma. My son also has acid reflux and has a gag problem. He was in feeding therapy due to a sensory problem. He would not touch his food and didn't like to get his hands dirty. If any of you have any ?'s you would like to me to answer just let me know.

Laura - posted on 06/09/2012

Me too!! we have a 7yr old with this... trying to work out new ways to help her at school. There doesn't seem to be very much info about ways to help or educational resources.. Does anyone have any good advice?

Samantha - posted on 03/16/2012

my 6 month has this but dont really understand tbh xx

Jeannine - posted on 03/11/2012

I have a 5 year old daughter with partial chromosome 16 deletion. I would be interested in connecting with other parents who have children with the same deletion. When our daughter was finally diagnosed after doing genetic testing we were told that she was the only person in the database at Children's Hospital of Philadelphia with this deletion.

Pam - posted on 02/28/2012

I have two children with 16q23.1q23.3loss.

Sarah - posted on 07/26/2011

You should look into "Unique" online. It is a group for rare chromosome disorders. Also, if you are on facebook, send me a friend request and I will try to add you to a private group for 16p deletions and duplications. : )

Monica - posted on 07/25/2011

HI My child has 16p11.2-deletion-syndrome we found out last year after many years of been given the run around. its hard finding others with the same condition. We are in Australia and here its called a rare condition nothing is known about it so she has been put in the too hard basket.

Sarah - posted on 03/15/2011

I just got the call from the Mayo Clinic today that my daughter has a partial chromosome 16 deletion. I would LOVE to talk to you!