Sam Stockton and Batten Disease Awareness Day

2025-2026 Bill 5509: Sam Stockton and Batten Disease Awareness Day - South Carolina Legislature Online

South Carolina General Assembly
126th Session, 2025-2026
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H. 5509
STATUS INFORMATION
House Resolution
Sponsors: Reps. C. Mitchell, Alexander, Anderson, Atkinson, Bailey, Ballentine, Bamberg, Bannister, Bauer, Beach, Bernstein, Bowers, Bradley, Brewer, Brittain, Burns, Bustos, Calhoon, Caskey, Chapman, Chumley, Clyburn, Cobb-Hunter, Collins, Cox, Crawford, Cromer, Davis, Dillard, Duncan, Edgerton, Erickson, Ford, Forrest, Frank, Gagnon, Garvin, Gatch, Gibson, Gilliam, Gilliard, Gilreath, Govan, Grant, Guest, Guffey, Haddon, Hager, Hardee, Harris, Hart, Hartnett, Hartz, Hayes, Henderson-Myers, Herbkersman, Hewitt, Hiott, Hixon, Holman, Hosey, Howard, Huff, J.E. Johnson, J.L. Johnson, Jones, Jordan, Kilmartin, King, Kirby, Landing, Lastinger, Lawson, Ligon, Long, Lowe, Luck, Magnuson, Martin, McCabe, McCravy, McDaniel, McGinnis, D. Mitchell, Montgomery, J. Moore, T. Moore, Morgan, Moss, Neese, B. Newton, W. Newton, Oremus, Pace, Pedalino, Pope, Rankin, Reese, Rivers, Robbins, Rose, Rutherford, Sanders, Schuessler, Scott, Sessions, G.M. Smith, M.M. Smith, Spann-Wilder, Stavrinakis, Taylor, Teeple, Terribile, Vaughan, Waters, Weeks, Wetmore, White, Whitmire, Wickensimer, Williams, Willis, Wooten and Yow
Document Path: LC-0502VR-GM26.docx
Introduced in the House on April 14, 2026
Adopted by the House on April 14, 2026
Summary: Sam Stockton and Batten Disease Awareness Day
HISTORY OF LEGISLATIVE ACTIONS

Date

Body

Action Description with journal page number

4/14/2026

House

Introduced and adopted (
House Journal-page 7
)

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VERSIONS OF THIS BILL
04/14/2026

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.

W
hereas, 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

W
hereas, 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

W
hereas, 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

W
hereas, 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

W
hereas, 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

W
hereas, 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,

B
e it resolved by the
House of Representatives
:

T
hat 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.

B
e 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 1:00 PM