Hello I have a daughter recently diagnosed in Missouri at Childrens Hospital in St. Louis. Her dx is 4q26 interstitial deletion. We go in April for the "talk" so I'm still in the dark except for FB 4q deletion site. i also founded a support group over a year ago in our home town that is all inclusive not only for the children with a dx but the siblings are encouraged and invited to participate in all activities. Little did zI know then that I would be seeking other groups because of the dx we have gotten.
My daughter is very lucky in that the most so far she has had to deal with is low IQ, DD and sensory issues, while challenging, they are managable.
There bio mom is low IQ, Bipolar (depending n the day and dr) and mildly MR, ADHD (IQ 67). The fathers gene pool is just as shallow. we are also the parents to her full blooded sibling who is ADHD ODD DD SA SPD.
At this point I am not "freaking out" over this dx, while rare it doesn't seem to be affecting her in too negative of a way, I say this because I have read some of the stories on here and my heart goes out to the families that are facing many more challenges then I.
Thanks for the opportunity to introduce ourselves to the 4q deletion family. If you want ot check out our group were are on FB... S.C.A.N. supporters of children with additional need: our motto "All children are special ours just have additional needs.
thanks Terry Faust Lebanon MO