Posted 11:53 pm Sunday, October 28, 2012
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Young boy with Batten disease still laughs, smiles
Corey Cameron crouched next to his son Casen's wheelchair in the aisle, inches away from his motionless face, and sang along with the Imagination Movers' song playing over the speakers before the concert.
“What you gonna be when you grow up, what you gonna be when you get big,” he sang.
Corey wiped away his tears as he sang the lyrics.
Casen, whose sixth birthday is in January, was diagnosed with late-infantile Batten Disease in June 2011. It's a fatal neurological disease for which there is no cure.
Casen played and laughed as a normal toddler before the diagnosis. Since, he has slowly lost his ability to swallow, walk, talk and see. Protein buildup, naturally removed from a normal child's brain, crowds the brain of someone with Batten Disease.
Slowly, Casen is becoming less and less responsive.
When Corey works a case involving small children in his job as a Smith County sheriff's deputy, he often gets choked up.
“Those are the hardest,” he said. “They always make me think of Casen.”
Corey, and Casen's paternal grandparents, Pamela and Bill, spend most of the weekends with Casen either sitting in the den with him or coaxing smiles when he hears his favorite toy truck, Mater, which quotes lines from the Disney “Cars” movie.
“When he's here, we focus on him,” Pamela said. “We have all the time in the world to do other things.”
On a typical visit to grandma's house on a Saturday in September, Casen is strapped into his special chair in the den. Casen has no control over the sudden jerking movements associated with the disease, and the chair ensures he doesn't fall.
He can't see the extensive Halloween decorations outside.
“He loved the lights and sounds last Christmas,” Pamela said.
There are 1,200 cases of Batten disease around the world, and the Cam-erons have gotten to know several of the families with Batten children.
Several of the children have died this year.
“What you gonna be when you grow up, what you gonna be when you get big,” he sang.
Corey wiped away his tears as he sang the lyrics.
Casen, whose sixth birthday is in January, was diagnosed with late-infantile Batten Disease in June 2011. It's a fatal neurological disease for which there is no cure.
Casen played and laughed as a normal toddler before the diagnosis. Since, he has slowly lost his ability to swallow, walk, talk and see. Protein buildup, naturally removed from a normal child's brain, crowds the brain of someone with Batten Disease.
Slowly, Casen is becoming less and less responsive.
When Corey works a case involving small children in his job as a Smith County sheriff's deputy, he often gets choked up.
“Those are the hardest,” he said. “They always make me think of Casen.”
Corey, and Casen's paternal grandparents, Pamela and Bill, spend most of the weekends with Casen either sitting in the den with him or coaxing smiles when he hears his favorite toy truck, Mater, which quotes lines from the Disney “Cars” movie.
“When he's here, we focus on him,” Pamela said. “We have all the time in the world to do other things.”
On a typical visit to grandma's house on a Saturday in September, Casen is strapped into his special chair in the den. Casen has no control over the sudden jerking movements associated with the disease, and the chair ensures he doesn't fall.
He can't see the extensive Halloween decorations outside.
“He loved the lights and sounds last Christmas,” Pamela said.
There are 1,200 cases of Batten disease around the world, and the Cam-erons have gotten to know several of the families with Batten children.
Several of the children have died this year.
“Sometimes when you're sitting here, he'll just laugh or smile real big,” she said. “We say 'Are those other Batten babies tickling you? They've come to play.'”
Families of children with Batten Disease, and others who have taken an interest, keep up with Casen through the “Casen's Crusade” Facebook page. Pamela began dressing Casen in shirts from different sports teams that his Facebook fans sent and posting the picture to the group.
“You need to get that Saints shirt off him,” Bill teased Pamela as she adjusted Casen in his chair. “Casen, how 'bout them Cowboys?”
Casen's faraway look doesn't change.
Casen began receiving Hospice services in early fall — the family is expecting six months to a year left with Casen.
For the last month, Casen has been struggling with urinary tract infections since his bladder stopped emptying properly. Doctors have scheduled a test on his kidneys for January.
“Sometimes I think of all the things he used to do,” Pamela said as she sits on the floor next to Casen's chair. “He used to ride a four-wheeler and he loved to sit in his 'Poppa chair' … Bill, can you imagine what he'd be like today? We'd have to put a leash on him.”
While Corey, Pamela and Bill seem to understand the finality, other family members may not. Pamela worries about Casen's 11-year-old brother, Colby.
“At 11, you understand, but you don't,” she said. “I was talking to Casen one day, and Colby said, 'You know Casen can't talk, but give him a couple years.' So you know he doesn't understand, and it breaks your heart.”
Another family in Longview with a child who has Batten Disease offered to answer any questions the Camerons have. But the Camerons haven't asked about what to expect as Casen's death inches closer.
“Those are just questions you don't ask,” Corey said.
The Camerons have memorized whatever makes Casen respond, which still includes the Imagination Movers, a band featured on the Disney Junior Channel. Corey keeps the band's music on his phone and will play it next to Casen's ear in the hopes of a smile.
Families of children with Batten Disease, and others who have taken an interest, keep up with Casen through the “Casen's Crusade” Facebook page. Pamela began dressing Casen in shirts from different sports teams that his Facebook fans sent and posting the picture to the group.
“You need to get that Saints shirt off him,” Bill teased Pamela as she adjusted Casen in his chair. “Casen, how 'bout them Cowboys?”
Casen's faraway look doesn't change.
Casen began receiving Hospice services in early fall — the family is expecting six months to a year left with Casen.
For the last month, Casen has been struggling with urinary tract infections since his bladder stopped emptying properly. Doctors have scheduled a test on his kidneys for January.
“Sometimes I think of all the things he used to do,” Pamela said as she sits on the floor next to Casen's chair. “He used to ride a four-wheeler and he loved to sit in his 'Poppa chair' … Bill, can you imagine what he'd be like today? We'd have to put a leash on him.”
While Corey, Pamela and Bill seem to understand the finality, other family members may not. Pamela worries about Casen's 11-year-old brother, Colby.
“At 11, you understand, but you don't,” she said. “I was talking to Casen one day, and Colby said, 'You know Casen can't talk, but give him a couple years.' So you know he doesn't understand, and it breaks your heart.”
Another family in Longview with a child who has Batten Disease offered to answer any questions the Camerons have. But the Camerons haven't asked about what to expect as Casen's death inches closer.
“Those are just questions you don't ask,” Corey said.
The Camerons have memorized whatever makes Casen respond, which still includes the Imagination Movers, a band featured on the Disney Junior Channel. Corey keeps the band's music on his phone and will play it next to Casen's ear in the hopes of a smile.
In late September, Corey and Pamela took Casen to an Imagination Movers concert in Longview.
Because Casen requires tube feedings at 10 a.m., 2 p.m. and 6 p.m. along with regular seizure medicine and changing, Pamela wasn't sure the concert officials would be able to accommodate them, she said.
She was pleasantly surprised when officials responded and said it wouldn't be a problem.
“If you requested something like that at most concerts, they would be like 'Really?'” she said. “But the Movers are all about children.”
The Imagination Movers are four New Orleans friends who starting writing music for their children in 2003.
The lobby at the concert venue crawled with young children, the Movers' primary audience. Some children stared curiously at Casen.
“Sometimes they come up and ask questions,” Corey said.
Corey strikes up a conversation with one of the mothers with whom he shares a bench.
“Would you like to hear about Batten Disease?”
“I've never heard about it,” she said.
Corey goes on to explain the disease and give her a flier for Casen's Crusade with information about the disease. It's a speech he and Pamela have given to strangers countless times.
When they take Casen backstage after the concert to meet the band, the band members sat to say hello to Casen and learn about the disease. Corey handed them Casen's Crusade fliers and T-shirts.
“When we do a fundraiser, I take pictures of the other children with me,” Pamela said. “It makes it real. On the map, you see these children all over the world. People need to understand what it is.”
Because Casen requires tube feedings at 10 a.m., 2 p.m. and 6 p.m. along with regular seizure medicine and changing, Pamela wasn't sure the concert officials would be able to accommodate them, she said.
She was pleasantly surprised when officials responded and said it wouldn't be a problem.
“If you requested something like that at most concerts, they would be like 'Really?'” she said. “But the Movers are all about children.”
The Imagination Movers are four New Orleans friends who starting writing music for their children in 2003.
The lobby at the concert venue crawled with young children, the Movers' primary audience. Some children stared curiously at Casen.
“Sometimes they come up and ask questions,” Corey said.
Corey strikes up a conversation with one of the mothers with whom he shares a bench.
“Would you like to hear about Batten Disease?”
“I've never heard about it,” she said.
Corey goes on to explain the disease and give her a flier for Casen's Crusade with information about the disease. It's a speech he and Pamela have given to strangers countless times.
When they take Casen backstage after the concert to meet the band, the band members sat to say hello to Casen and learn about the disease. Corey handed them Casen's Crusade fliers and T-shirts.
“When we do a fundraiser, I take pictures of the other children with me,” Pamela said. “It makes it real. On the map, you see these children all over the world. People need to understand what it is.”
