A house RESOLUTION

 

TO RECOGNIZE SAM STOCKTON IN HIS BATTLE WITH BATTEN DISEASE AND TO DECLARE JUNE 9, 2026, AS "BATTEN DISEASE AWARENESS DAY" IN SOUTH CAROLINA IN ORDER TO BRING STATEWIDE ATTENTION TO THIS RARE AND DEVASTATING CONDITION.

 

Whereas, Batten disease, a form of Neuronal Ceroid Lipofuscinosis (NCL), is a family of rare diseases caused by genetic mutations, thereby preventing the body's cells from properly disposing of waste in the brain and leading to progressive damage to the brain and nervous system; and

 

Whereas, it is estimated that 2-4 babies per one hundred thousand are born in the United States with Batten disease. Because of their damaged cells, children with Batten disease suffer progressive neurological impairment, including seizures, vision loss, loss of motor skills, and cognitive decline; and

 

Whereas, children with this disease have an average life expectancy of just eight to twelve years. Two years ago, Sam Stockton was born with this ultra-rare Batten disease; and

 

Whereas, every two weeks, two-year-old Sam and his parents, Jordan and Kolby Stockton, travel out of state for him to receive life-sustaining enzyme replacement therapy. This treatment is delivered directly to his brain, along with a second procedure to help slow vision loss. While this gives them hope, it is not a cure; and

 

Whereas, every year on June 9, the Batten Disease Support, Research, and Advocacy (BDSRA) Foundation supports International Batten Disease Awareness Day to bring attention to this rare disease. BDSRA is the largest support and research organization dedicated to all forms of Batten disease in North America; and

 

Whereas, the South Carolina House of Representatives recognizes the struggle and suffering that Batten disease poses for those who are born with the disease and those who love and care for them, and the members encourage all South Carolinians to become aware of the need for research and funding to make the world free of Batten. Now, therefore,

 

Be it resolved by the House of Representatives:

 

That the members of the South Carolina House of Representatives, by this resolution, recognize Sam Stockton in his battle with Batten disease and declare June 9, 2026, as "Batten Disease Awareness Day" in South Carolina in order to bring statewide attention to this rare and devastating condition.

 

Be it further resolved that a copy of this resolution be presented to Jordan, Kolby, and Sam Stockton.

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