This is the FB group I started for just us. Please click and then ask to join or be a member. It will be private! https://www.facebook.com/groups/176616986079599/
Hi Aimee! I tried to find you on FB, but there are several with your name. This is my FB link, so send me a message there if you can? I have set up the group. Nobody is in it yet. lol Thanks!! https://www.facebook.com/becky.brown.73932 If anyone emailed me, I haven't seen it. I don't check it often. :/
Hi yea im on fb under Aimee Watson. My son is 5 now and has just started at a special needs school. He is really coming on well with his speech however still has about 2 yr delay..he has the speech ability of a 3 yr old. He still very delayed with learning he still learning colours and how to count xx
There are very few people with this microdeletion so dont expect too much info. my daughter is 36 and we are still trying to get information and treatments for her. We are aware of 10 other people with 1p13.3 and they all have very different symptoms. The geneticist may not have a lot of info for you but hang in there. Most of our kids are relatively healthy and do fairly well in comparison to many people with genetic disorders. let me know how you appointment goes.
We just found out yesterday that my daughter has a Microdeletion on this chromosome 1p13.3. She is 8 months old, cannot rollover or sit up. She is verbal in her own way ( She's a baby) but we are just getting started with all this. Any advice? I am about to be referred to a Genticist. Thanks.
I have just found this site. My son is 8 and has 1p13.3p21.1deletion. He is non-verbal, has epilepsy and is incontinent. I haven't found any similar conditions before. I am in Australia.
So glad to hear from you! Glad John is doing better. Kim is too. We had a rough couple of years but she is really doing a lot better lately.
Hi Wildeerth, Is John your son? Is he also missing part of this chromosome? I think it's neat that they can find out this stuff about our genes now, but also kind of scary since so much is still a mystery. Thanks for the info, and take care! P.S. Hi Nightsong!
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