Living with Russell Silver Syndrome- Walker’s Story

               Searcy (LP)  In the world, about 1 out of 100,000 people are diagnosed with a disease known as Russell Silver Syndrome.  It is thought to be caused by a rare genetic disorder that takes place on chromosome 7 or 11.  A similar growth disorder known as SGA (Small for gestational age) is often confused with RSS.  According to Dr. Madeleine D. Harbison and Dr. Jennifer Braak Salem, a child born SGA often has similar features to a child born with RSS.  Parents and less-experienced doctors can become easily confused by these similar features, making a clinical diagnosis difficult.

Walker in the NICU incubator

Typically a person of RSS is abnormally small, has a larger head in relation to their body, and has trouble gaining weight.  Other features include a triangular shaped face, prominent forehead, curved pinkies, body asymmetry, and possible learning/and or speech disabilities.  In Searcy, there are only two known cases of the syndrome.  Walker Sexton of two years, was diagnosed with RSS not long after his birth.  At three pounds, he was born nearly a month early on May 4th of 2015 to Erin and Adam Sexton.  The doctors noticed a lack of growth before he was born and thought it best to take him before a fatality occurred.  

In the NICU, Walker was on a feeding tube in hopes of getting his weight up to a normal amount.  He remained  there for a month. Erin Sexton, his mother, referenced that having to stay in LR after his birth was most difficult. “It was the sweetest time because I had a precious baby boy that I thought I’d never have, but it was also frustrating because he had to weigh a certain amount before they would let him out of the NICU.  No one knew why he wasn’t growing at that time.  It was a roller coaster ride of emotions-worth every curve.”  

Walker Sexton at age 2 2017

At about one years old, Walker’s doctor projected the idea that he may have RSS.  No one believed it was a possibility at first, because he seemed normal in every way except his size.  After genetic testing, Walker was officially identified as having the syndrome.  His approximated height as an average male with RSS is 4’11”, however he is now taking growth hormones everyday that may alter that.  Each day he is recommended to drink one to two pediasures as well as eat regular meals.  Most of the time he has no issue clearing his plate, it just depends on the day.  Although he’s very petite, Walker   lives the life a typical toddler.  As Horton would say, “A person’s a person, no matter how small.”  (Horton Hears a Who)   

Walker age 2

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