Christopher, my husband George, and it looks like our twins all have the same genetic duplication. Who knew that a few extra copies of some of our chromosomes could cause so much trouble? The 16p11.2 duplication syndrome has been known about for a short time. What we know about the syndrome is this: 80% of kids with the syndrome are autistic OR are autistic-like. Kids can have structures missing in their brains, intellectual delays, language delays, seizures, motor skills delays, low tone, etc. We know that this is a syndrome for a reason. No two kids are going to look alike, present alike, etc. What we do know is that we need to do more in depth research on this syndrome to understand how it affects our kiddies.
We are in a genetic study right now to find out more information about the 16p duplication and what it means to our kids. Although we may not know the future of our kids what I do know is that I have pretty damn cute kids.
Pardon the chocolate faces, they love them some fondue :)
Because the 16p11.2 duplication is associated with autism, there was a ribbon that was created by a friend who has a daughter with the same 16p syndrome. The ribbon looks similar to the autism awareness ribbon but has a slight change to it.
This is taken from the 16p11.2 awareness ribbon page on facebook "the outer edge is purple for the children with this deletion that also have epilepsy (the epilepsy awareness ribbon is purple) ♥ the salmon colored puzzle piece is the 16th piece on the ribbon and also the 16th color used and Hannah's favorite color"
6 comments:
Your children are beautiful. I found you through Multiples and More. Good luck with your journey and God bless!
Your boys ARE cute and I love the look for the ribbon. I saw your post on Multiples and More. I have twins myself but am also a teacher for kids with Autism. I'm blogging all month for Autism Awareness. I hope you'll stop by!
Your children are gorgeous. Your story is incredible. I'm so glad I came over from Multiples and More. I also have twins and teach. I currently teach 2nd grade, ISP model. So nice to meet you!
Hi! I'm visiting from Multiples and More, like everyone else. I have a daughter who is autistic.
Sorry to hear you are having such a hard time with your school district. I can only imagine how frustrating that is. I hope that issue is resolved soon.
I enjoyed your insight.
Your boys are adorable, but I've said that from the first time I read your blog! :)
I think it's great you're trying to raise awareness like this. Hopefully, it will lead to answers for other parents who know something isn't quite right with their children's development, because even when we don't necessarily know what it may mean having a diagnosis somehow seems to help. I'm glad you have found others in the same situation, so you don't have to feel alone in all of it.
:::hugs::: and good luck!
I would love to be part of the hop if you will have me :)
I am also a blogger (www.dealiciousmom.com)
I have epilepsy and I am a special education high teacher so I believe I would be a great fit. Email me if you want - dealiciousmommy at gmail dot com
Thanks!
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