How many of us here have children with rare chromosome disorders? My DD, 6 weeks old, was recently diagnosed with a deletion on one of her chromosomes. It seems so hard to find information and support when so few people in the world share the same diagnosis. Sometimes I wish she had Down syndrome so I could at least join the support groups and meet other people in the same boat. The syndrome my DD has appears to have many of the same difficulties and potentials as Down syndrome but we can't be entirely sure as there are only 140 cases known in the world. It is such a hard adjustment to make and reality to come to terms with. Are there any other parents dealing with something similar?
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8/17/09 at 3:41pm