Gaines loses battle with rare disease

Published 5:00 pm Wednesday, January 5, 2011

Chris Gaines of Jemison passed away Monday at Shelby Baptist Medical Center in Alabaster, at the young age of 36.

Gaines suffered from Batten Disease, a rare neurodegenerative disorder that causes mental impairment, worsening seizures and progressive loss of sight and motor skills. He was diagnosed at a young age but lived much longer than many Batten patients.

Gaines had been in the hospital for about two weeks following seizures, said his mother, Becky Lucas.

“He lost the battle, but he didn’t lose the war because he extended what they said he would ever do,” Lucas said. “He was such a warrior; he was such a fighter, and he fought to the very last breath.”

Gaines and mother, Becky Lucas, in September 2010

According to the Batten Disease Support and Research Association (BDSRA), Batten occurs in an estimated two to four of every 100,000 births in the United States. Although it is considered rare, it has been known to strike more than one person in families that carry the defective gene.

Lucas provided around-the-clock care for her son. For several years, she has sponsored an annual golf tournament held in Bibb County to fund research for Batten Disease, for which there is no known cure.

“Even though he’s gone, I still want to raise money for research to help another child to never have to go through this or another mother to never have to hurt and cry like this,” she said.

Gaines was the son of John R. Gaines Jr. and Becky Lucas and was preceded in death by his stepfather, Jimmy Lucas and grandparents.

Funeral services are set for Thursday, Jan. 6 at 9 a.m. at Martin Funeral Home Chapel in Clanton, followed by burial at Providence No. 1 Cemetery near Montevallo.

Visitation was scheduled to be held Wednesday evening.

There will be a lunch at the Calera Elks Lodge following the graveside service for anyone who wishes to attend.

Donations may be made to BDSRA in lieu of flowers.