Hello. I am wondering if anyone out there has the same deletion as my son, Steeven? We adopted him 5 years ago and have been working with doctors this entire time to figure out different medical issues he has. He is 10 now. The only thing that showed up through genetic testing was the microdeletion on chromosome 4q13.1. The geneticist said there wasn't enough research out yet to know if this could explain some of our son's difficulties or not, so we just visit the doctor annually to keep up to date on things. My chiropractor suggested I look online and research for myself and try to find a community of people with the same deletion. So, here I am!

Hi, my daughter has just been identified with deletion 4q13.1, she is 2 years old. Genetics also advised they didn't have much info on what it means other than there are 3 genes identified to this deletion but they were not able to give any more info. I am interested to understand more as your son is older has there been any delays with his development? Thank you and I am Interested in your response Christy

Hi Christy! My daughter is 19 months old and was diagnosed with 4q deletion, 13.1-22.1, right after birth. She hass a 26 MB loss and is missing 169 genes. Developmentaly delayed in all aspects, but such a smart, kind and happy girl! There are a lot of similarities between all 4q-kids, but even though they have the same deletion they might have quite different problems:) I remember when my daughter got the diagnosis I was so eager to get information, and I still am. We were told she would die before turning 2 months, but look at her today! We were aldso told there was no one like her in the world, but we found one thriugh facebook. Do you have facebook? I recommend you to join our facebookpage "4q deletion"!! Vibeke.

Thanks Vibeke for your response. Great news to hear your daughter is a fighter. I have sent Facebook request but still waiting for it to be accepted. Thanks Christy

If I add you as my friend on facebook I will be able to accept your request. I'm not sure if the admin is available at the time:)