A concurrent RESOLUTION

 

TO RECOGNIZE April 3, 2024 AS "batten disease awareness day" IN SOUTH CAROLINA.

 

Whereas, Batten disease is an extremely rare genetic disorder that impacts the brain and nervous system. It appears in one of every one hundred thousand babies born worldwide; and

 

Whereas, symptoms for Batten disease include progressive vision loss leading to blindness, seizures, cognitive decline and dementia, problems with movement, personality and behavior changes, and shortened lifespan; and

 

Whereas, Batten disease is diagnosed through genetic testing. There is no known cure; and

 

Whereas, the South Carolina 2024 spokesperson for Batten disease is Jack Timmerman, a second grader at Lake Murray Elementary School. Jack is the son of Ned and Jaime Timmerman and was diagnosed with Batten disease in August 2023; and

 

Whereas, despite the adversity he and his family have faced, Jack's spirit has not diminished. His love and kindness extend to all that meet him; and

 

Whereas, Jack Timmerman celebrates his eighth birthday on April 3, 2024. It would only be fitting and proper to name a day in South Carolina in honor of Jack and in recognition of the adversity that he bravely faces each day.  Now, therefore,

 

Be it resolved by the Senate, the House of Representatives concurring:

 

That the members of the South Carolina General Assembly, by this resolution, recognize April 3, 2024 as "Batten Disease Awareness Day" in South Carolina.

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