Christmas on the River 2016 kicked-off in Demopolis Wednesday as Camilla Bett Smith, daughter of Kelley and Brandon Smith, was honored as the COTR Special Child for 2016. Camilla is 11-years-old and attends US Jones Elementary School. She was born Aug. 14, 2005, and for the first six months of her life she met all developmental milestones as expected. However, at age six months she began to have clusters of seizure activity, sometimes up to 80 seizures daily, diagnosed as Infantile Spasms. As she aged, continued seizure activity progressed to the diagnosis of Intractable Epilepsy. Doctors at Children’s Hospital of Alabama used over 19 anti-epileptic drugs to control her seizures without success. At one point, she went over a year and a half with severe hyperactivity and essentially no sleep at all.
“She has been through a lot!” said her mother, Kelley.
At age 4, the first surgical procedure to control seizures was a Vagal Nerve Stimulator. The stimulator was implanted and remains in Camilla today, but unfortunately it did not control the seizure activity and was ultimately turned off. At age six, she underwent a surgical procedure called a Corpus Callosotomy which separated the right and left hemispheres of her brain. This procedure resulted in six weeks of no seizure activity. Unfortunately, seizure activity did return, but the procedure enabled physicians to determine in what part of the brain the activity was occurring and three areas were later surgically removed in the right hemisphere of her brain. With these three areas of the brain quieted, she was completely seizure-free for over four years.
Of late, nocturnal seizures have been identified by her neurologists, but she has been basically stable on the five medications that she takes daily. During the course of our visit, and before her brother Crosby (age 6), could act first, she sang the Happy Birthday Song while blowing out one of her mother’s decorative scented candle.
“This is a girl that was not expected to have any speech, nor be able to walk, or live, or learn. As you can see, she is able to count, form sentences, say the alphabet, and comprehends the world around her,” said Kelley.
There are estimated to be over 5.1 million people in the United States with seizures or seizure disorder. When asked how their family has adapted to Camilla’s special needs Kelley simply said, “We decided to actively live and fit everything else right into our lives.”
The Smiths feel strength and support by extended family that lives nearby, Fairhaven Baptist Church family, and the Individual and Family Support Group through West Alabama Mental Health Center in Demopolis.
Camilla Bett Smith is a beautiful, enthusiastic, and joyful young girl. If you are lucky enough to see Camilla and her family around Demopolis celebrating Christmas on the River, or if you see her in the Children’s Parade, be sure to wave as she is the most Special Child of Christmas on the River this year.
COTR festivities resume tonight at 5:30 p.m. as the Public Square in downtown Demopolis is lit and the 2016 St. Nicholas is crowned.
For a full schedule of COTR events, click here.