You Are Not Alone
My Name Is Christine Gold, My daughter is Kelly Gold age 35. About 32 years ago, Kelly was diagnosed in London with Wolf-Hirschhorn Syndrome, and it was so rare they used her for […]
I Steal Hearts
Ever since Justine’s birth, I have been told so many negative things. Justine was born with a rare chromosomal
My Sister Martha
Her name is Martha. She’s my sister… As a child, I knew I was a very important part of Martha’s life. I was the only one she would go potty
Dear Mom and Dad From Your Other Kid
Dear Mom and Dad, I’m the “other” kid in the family… the one who doesn’t have a disability. I see you looking worried sometimes and
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They Traveled the Road Before Me
Hearing the diagnosis of a genetic disorder for your child is a lonely place to be. Lonely, because you’re told very few children or adults have the disorder. Lonely, because
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She Knew! She Looked Around and She Knew!
My lovely daughter was undiagnosed until she was sixteen years old. That was not unusual at the time. When she was sixteen the imaging capacities had gotten better and the
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