South Carolina family raises awareness of rare Batten disease

(WPDE) — June 9 marked International Batten Disease Awareness Day, shining a light on a rare, inherited neurodegenerative disorder.

It primarily affects children and causes harmful waste material to build up inside the cells of the brain and nervous system.

One South Carolina family used the day to raise awareness as their 2-year-old son, Sam Stockton, lives with CLN2 Batten disease.

Sam was diagnosed at 16 weeks old, and his family says they travel every other week for enzyme-replacement therapy while also searching for clinical research opportunities.

Through Hope for Sam, the family is working to spread information about Batten disease and support other families facing rare diseases.

“Just the more you know about rare diseases, I never knew that over 300 million people worldwide live with rare diseases. And that means there’s less access to care because people aren’t researching it and not as many people have it. So the more information that’s out there, we feel is the better,” Jordan Stockton said.

There are 13 known types of Batten disease, and there is no cure. Researchers estimate the disease affects about two to four out of every 100,000 births in the United States.

The Stockton family says they have found support through the Batten Disease Support, Research and Advocacy Foundation, a nonprofit dedicated to helping families navigate the disease while providing resources.

More information and donation details are available at this link.