Michele - posted on 01/31/2009 ( 15 moms have responded )
Hi. I am looking connect with moms who have a child with a chromosome abnormality involving #18. Our daughter has partial trisomy 18 with an 8p deletion. She will be 3 in May and has beat every odd against her. She is learning cmunicates right now through sign langauge due to her speech delay(which is really her only deficit) She wears glasses, which are adorably cute!! I would love to share our story and hear from others with asimilar diagnosis. She was diagnosed at 6 months of age and I have gained a wealth of knowledge about the medical aspect since that time by consulting with geneticsts, neurologists, orthopaedists, counsleors, and any book or medical journal I can get my hands on. My best advice, don't compare your child to others you read about on the internet. each childs DNA is unique to them and just bc they may have an abnormality concerning 1 or 2 chromosomes....they have all of their other DNA "in order" and that can often compensate in many wys for the loss or gain of genetic material. I as terrified out daughter would be retarded, never walk, have a life threatening heart or kidney condition and on and on......She has none of the things I feared. The docotrs who told me that they would have advised e to abort her had we known in utero, now say she is an unexplainable miracle. She isn't unexplainable at all....she is however a MIRACLE, the explanation is GOD. Please conatct me if you are in a similar story or even if your child doesn't have something similar to my child. I was scared as many of you may be but my mission now is to tell toher sabout our Makena and give them hope becasue believe me, there is more hope than you realize if you just grab hold of it. I have been on both sides of the fence and I really want to meet other moms going through what all comes with finding out your child has "something" that isn't even documentated. Ther is a light in the tunnel. I would love to help you find yours.