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Wednesday
Jan052011

Thumbelina Kids: Tiny as Dolls, Kids with RSS Strive to Fit In

Photo Courtesy - Russell-SilverSupport.org(LIBERTYVILLE, Ill.) – Ian Earley wore preemie clothes until he was nine months old. During potty training and beyond, he was too small to get on the toilet. He couldn't reach the sink to wash his hands until he was six.

Ian has Russell-Silver syndrome (RSS), a form of primordial dwarfism that affects one in 100,000 babies, according to the National Institutes of Health.

Without growth-hormone treatment, boys will only reach an average height of about five feet one inch, and girls will only grow to about four feet 10 inches.

"Clothing is a huge challenge," said Ian’s mother, Heather Earley. "This past summer, even at the age of seven, Ian could wear certain size 4T shorts. We have to buy him six-slim jeans due to his height. But they still need to be cinched at the waist."

In about 40 percent of the cases, Russell-Silver results from the abnormal regulation of certain genes that control growth. Severe long-standing placental insufficiency can also lead to severe intrauterine growth deficiency that resembles RSS.

Children such as Ian struggle not only with the mechanics of the physical world but with the social stigma that comes with being unusually small. His mother writes about the challenges of living with the syndrome on her blog, Russell-Silver Advocate.

"This child has the most amazing charisma of anyone I have met in my life," Earley, 43, said. "But he knows he is different and knows he is small. He has some anger issues because his brother is only a year and a half older and three times his size. He is an adorable and loving child but he hates being different."

RSS, sometimes referred to as Thumbelina syndrome because of the fragile, doll-like stature of the children, is characterized by slow body growth, poor muscle tone and digestive problems, such as reflux and constipation. In less than half of all cases, the condition begins shortly after conception.

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ABC News Radio