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

Jaimi - posted on 10/20/2010 ( 30 moms have responded )

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I am new an just trying too find someone else in my situation?

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Jeannie - posted on 01/01/2014

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Need to find someone who's child has chromisone 16p11.2 duplication preferably 12 yrs or older

E - posted on 03/27/2013

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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.

Sarah - posted on 07/26/2011

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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. : )

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Elizabeth - posted on 07/10/2014

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Hi my son has chromosome deletion 16p11.2 he is 11 yrs old and after having seizures from 4 months to 3 years and being in and out of hospital to date. With the newest testing we only found out in 2013 what was causing his seizures, speech impairment, global developmental delay and some minor facial feature defects. Its being a long road for Easton also being in casts from hip to toe for 'Banana Feet' & then undergoing surgery at 4 yrs old for Congenital Scoliosis ( Twisted Spine', looking at further surgery as his spine is still curving but doctors need him to gsin height before they can operate further obviously the more they operate the less hell grow :( Ive being looking for support groups in nz but havent had much luck. Any help would be great :) elizabethtorea@hotmail.com

Steffi - posted on 05/26/2014

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Hey there,
My daughter is 2.5 yrs old and was diagnosed with a 16q.23 deletion. There is not a comparable case in the database but i would like to get in contact with other moms and exchange experiences. She is not walking yet and also not talking, has little interest in food and is the size of a 1 year old baby. Please email me or send me a message.

Nichola - posted on 05/19/2014

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Hi My son is 11 and has been diagnosed with this it is a maternal genetics.
would like to speak to someone who has a child aroiund the same age and is suffering from behavioural difficulties.

Angel - posted on 11/16/2013

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Need help here, my 9mo. Old little girl was just diagnosed with this disorder and just want to know some tips on what I can do with and for her to help her in her future with any situation, any help will help. (alotta74@gmail.com Angel) is anyone located in wi or mn?

Prue - posted on 11/14/2013

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Hi my child has been told deletion of chromosome 16 any info would be great. (pruetravers@yahoo.com.au)

Pavang - posted on 09/26/2013

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My son has 16q24.3 Deletion. I need support please help or find me on facebook under Pachia Vang. I myself is disable with seizure that makes it harder'

Janice - posted on 09/16/2013

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Hi,
Just found this page and thought I would introduce myself.
I am Janice married and have 6 kids. my youngest has chromosone deletion 16q23.1.
She is 20 years old. She has developmental delay, can't walk or talk, is incontinent and has seizures. Her seizures are mainly under control with lots of meds. She still will have about 5 a week.
We have been going through the genetic testing. I have 2 sisters with epilepsy.
Testing has been done and hubbie is clear but I have a chromosone abnormality.
Kym is a beautiful girl and a delight to have. We have gone through many hurdles but with perseverance we pulled through.
Any questions ask away.

Lika - posted on 08/14/2013

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My son and I both have the 16p11.2 microdeletion. There is a group on facebook that has several families that are a child who is diagnosed.

Here is the link: https://www.facebook.com/groups/gathering16p/

Many people there, and everyone wants to be a part of the support group, so you're family when you're there.

Sabrina - posted on 06/13/2013

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My son is 6 and at age of 4 was diagnosed with 16p12.1 deletion. There's is very few stories of other children with this same deletion and I was looking for other moms to talk with about this. I have learned a lot but still want to keep learning so I can help him the best I can!

Elizabeth - posted on 03/20/2013

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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

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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

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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

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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

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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

Shamorria18 - posted on 01/31/2013

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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!!!

User - posted on 10/29/2012

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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

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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

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

Heather - posted on 07/14/2012

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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

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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?

Jeannine - posted on 03/11/2012

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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.

Amber74_74 - posted on 07/25/2011

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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

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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!

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