VACAVILLE — The idea started as a way to simply honor their cousins who have Batten disease.
Instead of just running in their name in Saturday’s Run for Fun at the Kaiser Permanente campus in Vacaville, Jakob and Zackery Sharp, 13 and 17, respectively, will push their cousins in wheelchairs while trying to raise money and attention for the debilitating ailment.
“Our original plan was to run for the cause and get awareness,” Zackery said. “But this was a good opportunity to include them in something.”
Batten disease is a fatal condition that causes children to suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease become blind, bedridden and unable to communicate.
Korry and Rachael Sharp, 19 and 16, respectively, have had Batten disease since childhood, something Zackery said has robbed them of memories while growing up. He said he hopes by passing out information and spreading the word, people will be educated and more willing to donate to the cause.
“Korry should be in college. Rachael and I should be getting ready for college. We no longer have the ability to do that,” he said. “This way they can be remembered and what this disease does to families will come to mind.”
For Amy Sharp, the boys’ mother, it will be yet another effort to raise money and awareness for the pair. The family has periodic fundraisers to benefit the Batten Disease Support and Research Association. She said the boys have always helped support their cousins and she’s happy to see them taking it public.
“I was so proud of them when they told me,” she said. “It’s a different growing up than I ever had.”
For contributions to the Batten Disease Support and Research Association, visit BDSRA.org or send donations to P.O. Box 6146, Vacaville, CA 95696 in the name of BDSRA.
Reach Danny Bernardini at 427-6935 or firstname.lastname@example.org. Follow him on Twitter at www.twitter.com/dbernardinidr.