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Late December 1986, one month before Anna was born. I remember a van parked in front of our house, a woman tugging at something heavy inside, and a small wheelchair [...]

A mother describes a rare genetic disorder called cardio-facio-cutaneous syndrome that afflicts her son. Little is know about the disease, which involves mental retardation as well as the heart, skin and face.

As I leafed through the little magazine, my eyes suddenly caught a short notice and my heart turned over. I read it again to be sure incredibly, an Osteogenesis Imperfecta […]

A devastating disease claimed my husband's life. Would the same fate await my son? My son got married on a brilliantly sunny and warm November day. I remember how golden […]

Now I can only hope that my child escapes my fate. Sitting next to my dad at an Oregon State football game, I tried not to pay too much attention […]

Does it look to you like he's favoring one leg?' I asked our babysitter as my 8-year-old walked down the hall. Our perfectly healthy son, Vincent, began limping four years [...]

I was born with clubbed feet and hands, a deformed face with an unusually small mouth and low-set ears, severe scoliosis, and knees that were bent back to almost 90 [...]

IN MY FAMILY, we pride ourselves on our openness with one another. We talk a lot. I'm on the phone with my mother and sisters every week, and we e-mail [...]

'Oh, by the way,' said my son's teacher, 'there was something I forgot to tell you last week. A message from the school doctor.' The whole school had been screened [...]