South Carolina H 5509: Sam Stockton and Batten Disease Awareness Day

Bill Text

2025-2026 Bill 5509 Text of Previous Version (Apr. 14, 2026) - South Carolina Legislature Online 

South Carolina General Assembly
126th Session, 2025-2026

Bill 5509

Indicates Matter Stricken
Indicates New Matter

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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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This web page was last updated on April 14, 2026 at 12:59 PM