“She is like a tree planted by streams of water, which yields its fruit in season and whose leaf does not wither – whatever she does prospers.” – from Psalms 1:3
Kennedy Smith, at 23 years old, has a child-like disposition and sunny smile that belie her true wisdom of many things beyond her years. As her father Roger says, Kennedy can teach those around her something new every day.
Kennedy was born to her parents Roger and Sadonna Smith at only 28 weeks gestation, making her extremely premature. Upon her birth, doctors only gave her a 4% chance of survival. In addition to her tiny size and weight, doctors immediately diagnosed Kennedy with a cleft palate, which ultimately required several surgeries. But, the diagnosis that eluded physicians at Vanderbilt and would become a defining factor in Kennedy’s life was finally made by doctors at Johns Hopkins in Baltimore. The diagnosis of 1q deletion, a chromosomal abnormality, was made by the Johns Hopkins doctors after extensive testing.
According to rarediseases.org, 1q deletion a chromosome abnormality that occurs when there is a missing copy of the genetic material located on the long arm (q) of chromosome 1. The severity of the condition and the signs and symptoms depend on the size and location of the deletion and which genes are involved. Features that often occur in people with chromosome 1q deletion include developmental delay, intellectual disability, behavioral problems, and distinctive facial features. Most cases are not inherited, but people can pass the deletion on to their children. Treatment is based on the signs and symptoms present in each person.
Kennedy’s parents were not told at any time during Sadonna’s pregnancy that there was anything different or worrisome about their baby. They were already parents to daughter Chesney, who was born with no health problems or chromosomal abnormalities. Although some questions about Kennedy’s condition were answered once an accurate diagnosis was made, medical professionals say that 1q deletion is so rare that there is not much information on its progression or impact. But one thing was and still is true – Kennedy’s parents and sister loved her unconditionally before she was even born, and have spent every day loving her just as she is.
Her dad says that Kennedy has hobbies and enjoys doing lots of things that most young ladies like to do – especially traveling and shopping. Her niece Camila, who is four years old, is Kennedy’s best friend and shopping partner (along with Camila’s mom Chesney). All you have to do is mention going on a shopping trip, and Kennedy is ready to go at a moment’s notice! What young lady can’t relate to that?
A big part of Kennedy’s life is Sheltering Tree Ranch in Savannah, TN. Established in Savannah in 2007, Sheltering Tree Ranch is a public education, scientific, and religious organization dedicated to providing a supportive environment for children and adults with unique challenges. The Ranch is where Kennedy goes to school every day, Monday through Friday, and receives the extra support she needs. Her dad says that Kennedy especially loves the equine (horse) therapy the Ranch provides. Although Kennedy is non-verbal, she may be observed “communicating” with and through the horses that she loves so much.
Kennedy is a young lady who defines the statement, “She doesn’t have a disability, she just has a different ability.” All too often we find those who are different assigned with the label of “disabled” without taking into consideration all of the wonderful aspects of his or her life and personality. One of the sweetest and most profound compliments that could ever be given was what Kennedy’s dad Roger said about her: “Kennedy sees everyone the same…no affliction, no race, no differences. If we all could only see the world through Kennedy’s eyes, what a wonderful world it would be.”
