A Life That Didn’t Go According to Plan: A Batten Disease (BD) Story

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In June 2017, a film was released showcasing the story of a young girl named Kennedy Hansen who had Batten disease—a disease that causes a damaging buildup of lipofuscins in the body’s tissues.

Motor skills and cognitive abilities begin to decline. For some, it’s not until these signs arise that anyone realizes something is wrong.

That was the case for Kennedy, who only lived for a year after her diagnosis.

Kennedy’s life certainly didn’t go according to plan. But her parents are so grateful for the time they had with her, as well as the lives she touched. Even in the worst of her days, when she was nonverbal and confined to a wheelchair, Kennedy would give her friends and family hugs, letting them know how much she loved life and loved them.

Those closest to her created the H.U.G.S. Foundation, which works to provide financial assistance to families dealing with Batten disease and other terminal illnesses. The organization stands for Healing, Uniting, Giving, and Sharing, which captures the exact essence of who Kennedy was.

Inspired by Kennedy’s love and their own desire to bring awareness to Batten disease, her parents also worked to create a book telling her story, which conceived the recent film adaptation.

As the film spreads across the United States, so does Kennedy’s story of bravery, strength, positivity, and love.

Read more about the film and watch the trailer by clicking here!




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