Camilla Bett Smith honored as COTR Special Child

11-30-2016 -- Demopolis, Ala. -- Camilla Smith (center) blows bubbles with her parents, Kelley (left) and Brandon Smith, before she threw the breaker to light the Love Light Tree at Bryan W. Whitfield Memorial Hospital on Wednesday night. This event kicks off the 2016 Christmas on the River events in Demopolis.

11-30-2016 — Demopolis, Ala. — Camilla Smith (center) blows bubbles with her parents, Kelley (left) and Brandon Smith, before she threw the breaker to light the Love Light Tree at Bryan W. Whitfield Memorial Hospital on Wednesday night. This event kicks off the 2016 Christmas on the River events in Demopolis.

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.

Photo of the Day: December 5, 2014

Saelens Radio Shack

Collins Communications and Radio Shack got together and presented the 2014 COTR Special Child Jacob Saelens some early Christmas presents for him and his brothers and sisters.
Shown in this picture are Jacob and his mother along with Collins and Radio Shack employees.  Also pictured are COTR Chairman Diane Brooker and Demopolis Chamber Director Michael Kennedy.

(Photo courtesy of John Scales)

Saelens is COTR Special Child

jacob saelensIn all of his nine years, Jacob Saelens has proven to be special in many ways.

The U.S. Jones third-grader is the Special Child for the 2014 Christmas on the River. The son of Michael and Brandy Saelens celebrates his birthday Dec. 22, just two weeks after he opens COTR Dec. 3 by flipping the switch to light the Love Lights tree atop Bryan W. Whitfield Memorial Hospital.

He also is looking forward to riding in the Day Parade on Dec. 6.

Jacob, an avid football fan, always has been special to his family. One of four children, he was born with Hypo-plastic Left Heart Syndrome, which means he has only one ventricle (pumping chamber) in his heart.

Jacob underwent heart surgery before he was born, again at five days old, at seven months, and at age 2 and a half. Jacob’s surgeries were performed in Boston, but all treatment now is being done at the Benjamin Russell facility, a division of Children’s Hospital in Birmingham, his mother said.

The surgery he had at seven months caused a blood clot in his right leg that later had to be amputated. Jacob now walks — and runs — with a prosthetic leg.

His mother said surgeries have rerouted the whole circulation of his heart. Jacob’s disabilities primarily are physical, but there other developmental issues. Mrs. Saelens said he is the size of their 5-year-old daughter Anna Leigh.

Jacob also has a brother Matthew, 7, and another sister, Harley, 13. Jacob is also the great-grandson of longtime BWWMH staple Minnie “Mama” Saelens.

He continues a long line of special children recognized during COTR. The tradition began in 1988 when Caro Osborne “wanted to do something for children with health problems.” Mary Tucker succeeded her as chairman, and Linde McAdams has directed the program for the past four years.

Jacob Saelens throws the breaker to turn on the lights of the Love Light Tree.

Jacob Saelens throws the breaker to turn on the lights of the Love Light Tree.

2012 COTR Lighting of the Love Light Tree (video)

(Video) Lighting of the Love Light Tree by Windham T. Lee, Jr.