Remembering Casen: 7-year-old whose story touched thousands memorialized by friends

Published on Saturday, 26 April 2014 22:25 - Written by Rebecca Hoeffner

QUEEN CITY — People from all walks of life attended the funeral on Saturday for a 7-year-old boy whose story reached thousands across the world.

For almost five years, Casen Cameron battled Batten Disease, a fatal neurological disorder shared by only 1,200 children worldwide, with 20 of those in Texas.

“This is one of the most difficult funerals I have done,” said Ben Aquirre, pastor at Christian Fellowship Church of Queen City. “This young man has left a mark on our hearts.”

Many of the people who were affected by Casen never met him, but kept in touch through a Facebook page set up by his paternal grandmother and his father. When Casen died on Wednesday, his page had more than 64,000 followers. His grandmother, Pamela, organized dozens of special events to raise support and awareness of Batten Disease and to help pay medical and funeral expenses.

“The impact he had tells us each of us can make a difference,” Aquirre said. “It made me remember that the things I go through are not a big deal.”

According to the national medical library, Batten Disease involves the buildup of an abnormal material called lipofuscin in the brain. Evidence suggests it is caused by problems with the brain’s ability to remove and recycle proteins.

Just before Casen’s third birthday, he appeared to be developing normally. Then, he had his first seizure. He slowly lost his ability to walk, talk and his vision. He had a feeding tube put in after he was no longer able to swallow.

For a while the family would use his sense of hearing to communicate with him; they would talk and play his favorite songs, and Casen would smile.

“Look at how Casen handled this, he still smiled,” Aquirre said. “You can find strength to face what you face by remembering the strength Casen had when he faced this illness.”

Casen’s family hopes to continue to raise awareness of the disease that took Casen. And hopefully one day, researchers will find a cure.

“I’m not done with Casen’s Crusade,” Pamela said. “Not ever.”