A dinner tonight will salute the work of Nebraska and western Iowa families struggling with a life-altering genetic disability. “Fragile X” syndrome is a genetic condition found in young children, and one of those is the son of Kelly Randels. Cody was 18 months old when his parents started taking him to doctors because he wasn’t walking or talking, and was still eating only babyfood. Finally an Omaha pediatrician mentioned screening for Fragile X. Randels says Fragile X is the most common inherited cause of mental impairment. The genetic condition that can cause the condition can be passed down for generations before a child is born with Fragile-X, and Randels says many are like her — unaware it exists until they have to deal with it. She says if affects one in 4000 boys and one out of 6000 girls that are born, though in out of every 259 women are carriers for the gene — most like her, having no idea it existed until her son was born with it. Kids born with Fragile X Syndrome have few physical symptoms but can suffer anything from learning disabilities to a diagnosis of mental retardation. Randels holds two masters degrees, yet she never knew she was a carrier of a gene that could cause her son to be born with a condition that has him diagnoses as mildly mentally retarded. Though there’s no cure, families find information and support in groups throughout the country. This group’s for all Nebraska and western Iowa, including families from Council Bluffs and Persia, and among the 26 families in the support group are 36 children ranging from one year old to age 52. The kids get to meet others with the same condition, and parents share information from raising tips to the latest scientific news. The governor of Nebraska is guest speaker tonight at the gala banquet of the regional Fragile X family support group in Omaha. Information and local support groups are on the website www.fragilex.org
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