ETX boy fights rare neurological disease on his birthday - - Tyler, Longview, Jacksonville |ETX News

ETX boy fights rare neurological disease on his birthday


Casen Cameron is fighting a rare neurological disorder called Batten disease.

The Batten Disease Support and Research Center estimates four out of every 100,000 children born in the United States has the disorder. Cameron is also celebrating his sixth birthday.

"It's a little bit more special this year because we aren't sure if he'll be around next year for this seventh," says Corey Cameron, Casen's father.

Doctors told the Cameron's that Casen would become blind, bed ridden, demented and unable to communicate. The family says that diagnosis did not seem possible.

"Casen was a normal little boy and then just before his third birthday, he had a seizure," says Pamela Cameron, Casen's grandmother.

Casen was first misdiagnosed with epilepsy. It took doctors two years to diagnose him with Batten disease.

"There is no cure, there are no treatments, it's just fatal and so you have to deal with that every day," Pamela Cameron says.

Since there is no cure, Casen's father and grandmother decided to spread awareness and raise money for research by creating Casen's Crusade.

"Our message is get research, so we can find a cure. Losing one baby is too many," says Pamela Cameron.

The Cameron's use Facebook to spread awareness and want parents to be on alert if their child starts having seizures.

"I post everything, I don't want to hide anything. I want the world to see what we deal with on a daily basis. I want them to understand that there are other children that have the same disease Casen has. I want them to know that these children deserve what we have, life," says Corey Cameron.

"Because it is rare, more people need to know about it. And the only way to get awareness is to put it out there," Pamela Cameron says.

Casen has lost his sight and can no longer speak or support his body weight, but he can communicate with his smile.

"The smiles we get, sometimes a few giggles, you know that's priceless to us," Pamela Cameron says.

Casen is a fighter whose battle is one of far too many.

"Somebody, more than one, help us help these children, not just Casen,, all of them, they all need the help," says Corey Cameron.

You can donate to Casen's medical fund at City National banks in Sulphur Springs, Winsboro, Holly Lake and Quitman. 

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