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When my daughter Allison was three days old, my sister phoned sobbing to tell me that her Grant had been diagnosed with an inherited disorder, "Fragile X Syndrome." A few weeks later, DNA tests proved that not only did I carry the gene, but my baby girl would have Fragile X. In one instant, frustration, anger and overwhelming anxiety replaced my short-lived hopes and dreams for my newborn daughter.
"It isn't fatal" my pediatrician exclaimed with annoying optimism. "You don't know how severely she will be affected by this, so just enjoy her." How does one look at a child and not wonder what will become of her? Would she be mentally retarded; would she have severe emotional problems and seizures? How long will I have to wait to know?
My daughter is five now, and like so many other parents around the world, I carry the weight of Fragile X every day. But I have hope now, that one day soon, with FRAXA's help, scientists will find helpful treatments and a cure for Fragile X Syndrome. Only then will our children find their way on a smoother path -- the path they were meant to take.