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Raising Special Needs Kids Raising Special Needs Kids

20p12.3 Duplication

Posted by on Oct. 3, 2013 at 3:03 PM
  • 6 Replies
This is my daughters diagnosis....We found out this morning and Ive been numb most of the day. I got on uniquechromo.org and read the info about 20p duplications and it fits my daughter very well. It also means my daughter may be mentally impaired beyond just her speech delay. Its known to cause autism and ADHD which I worry about a lot since she already has sensory problems. We know that this is pretty rare and not much is documented about it so while we have an answer we are still in the dark about what this could mean for her long term. I have so many questions that I dont even know how to process. What will this mean for her long term, how will her adult life be affected. Will she need care her whole life? We have an older daughter that seems unaffected but we do not know if my husband or I passed something to her or not. I need to know how to cope with all of this, I was not prepared for this.
by on Oct. 3, 2013 at 3:03 PM
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Replies (1-6):
Elyssa414
by Elyssa on Oct. 3, 2013 at 3:19 PM
I'm so sorry. I remember when my son was diagnosed with West Syndrome- and reading about life long care and prognosis and all that. It hits like a ton of bricks. Unfortunately, only your daughter will be able to show you what she will need. Even with the exact same diagnoses, every child is so different! The expectations that the diagnoses placed on my son were so much lower than what he has achieved in the 10 years since!
Hang in there- we've all gone through it in one way or another. *HUGS*
Bluecalm
by Silver Member on Oct. 3, 2013 at 5:59 PM

My son is Unique too. You can pm me if you want. You will get tons of support here and on Unique which is an awesome site. If you're in the US, you can also join Chromosome Disorder Outreach. My son got his diagnosis last year and it was unexpected and overwhelming. I have done a lot of reading and research into his deletion, and the main thing I've learned is that each child will write his/her own story. Try not to worry too much about the possibilities. When it's a rare condition, they have such a small population to go by and it doesn't mean it's even connected to the dup/del. My son has a speech/language problem. He "could" have autism, adhd, heart and kidney problems, but guess what? He doesn't have any of those.

letstalk747
by Joy on Oct. 3, 2013 at 11:20 PM

lot of emotions being felt im sure , huggggs

Linagma03
by Gold Member on Oct. 3, 2013 at 11:33 PM

 Lina has dup on 2 chromo and no other people have been found to have this so everything is a surprise for us. It is scary but you'll do great! Hang in there Momma!

mandee1503
by Amanda on Oct. 4, 2013 at 12:36 AM
*hugs*
darbyakeep45
by Darby on Oct. 4, 2013 at 6:30 AM

Big hugs mama!

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